Sunday, 22 September 2013

The dumb resurgence of hope.









It feels like such a long time since I last wrote on here and I have so much to tell you all... And yet I feel like I really haven't done anything in the last month and a half, other than visit doctors and hospitals!

As per usual, nothing has changed with my endometriosis. The pain is still as bad and every now and then I get new, agonising pains that almost bring me to my knees. I'm still on the full amount of tablets and my periods are still all over the place. Last month it was 3 days late and, of course, I got my hopes up, but alas, a pregnancy test soon sorted that one out for me and then said period arrived and gave me hell for almost 2 weeks again. I feel sad that the clump of endo that had been pulled apart in January is back to 'normal' and stuck together again and I think about that a lot. I feel now like the surgery I had waited on for so long was pointless. But then, you have to try everything (again and again) don't you!?


My acne has also been getting worse and worse over the past months and right now I'm at a total loss with it. I bought a fancy facial brush a few months back and it has made a huge difference to the texture and cleanliness of my skin, but it's my hormones that are the problem. I can get my skin to moderately clear and smooth with just blemishes that need covering but then, that time of the month comes and unfortunately, so does a mass of painful, itchy spots. Has anyone got any tips with coping with hormonal acne? I've pretty much tried everything I can now cosmetically, and using the facial brush (which I'll do a little write up on soon) has shown me how dirty my skin still was even after cleansing each day, but, hormonally, what can I try? I don't want to try tablets (I'm on enough as it is!) and obviously the contraceptive pill is out of the question. I've tried one cream from the doctors before but that just dried my skin out terribly and made it sore. Are there any natural treatments anyone can suggest?


I had my second liaison psychiatry appointment in August and boy, what a pile of shite that was. As mentioned previously, I'd been struggling with the fact my appointment had been pushed back by a month already - amongst other things. But, I arrived at the hospital and found I was seeing a different doctor. This time it was a man, and I didn't catch his name but he said he'd be seeing me over the next year. I didn't know how much he knew about my situation so I filled him in but he seemed to forget all that and kept referring back to the letter that my pain management doctor had copied psychiatry in on. I explained where I was having problems, what was happening treatment wise, what had come out of my last psychiatry appointment and, basically, he butted in and ignored everything I said. He told me that other people with chronic pain are able to work so we need to work out why I can't. He said that I'm only depressed because of the recent fertility clinic appointment we had and that after my other pain management treatments (psychology and physiotherapy) are complete I won't be depressed. He also said that I need to get out the house more. Great ha!? So apparently my depression that I've suffered with since I was 16 will all be completely gone by February next year and I won't have any more problems. I tried questioning him on things and tried to make him see that I was attending liaison psychiatry for that exact point, that I cannot get out the house, but he just wouldn't take that in to consideration. I said that I try and get out the house whenever I can but I cannot drive (due to the pain and amount of medication) and cannot always walk the distance to the bus stop. When someone is around to drive me then I will go out with them (he also questioned why people weren't around to drive me - errrmmm because they work!?). He asked why I don't go out for walks and I reiterated my above point and said that some days I can't even get down the stairs without being in agony and when I do walk, I suffer more on the following days - to this he suggested I walk as far as I can and back again. I was so upset that he just didn't listen to me at all and came out of the hospital and sat on a bench in tears. I had waited all that time for someone to give me a totally generalised view of depression and not know anything about endometriosis or care to take in to consideration my situation. I felt completely lost and empty. I didn't know where to go from there or what to think. I was just devastated from it and felt really hurt that someone in that sort of position could care so little and hurt someone so much by not thinking.


I went back to my GP following that appointment and told my doctor all about it and asked for some help. My head was all over the place, I was crying all the time and I felt more depressed than I had done in months. I was at the point of pleading with her when she talked me through everything and suggested I try counselling again along with a different antidepressant. I've now been on Duloxetine 30mg (Cymbalta) for just over 2 weeks and so far I've not noticed too much difference - as I'm not expected to have yet. I feel a little better for having someone understand me and help me but apart from that my emotions are still very much the same. I see my GP again on Tuesday, this week, so she can assess how I'm doing on these tablets but I don't think I'll be going back to liaison psychiatry again.


I received a referral to the counselling service last week, but on the same day I also got my appointment through for my psychology appointment (part of my pain management - oh, and just to add, I'm still on the waiting list for the physiotherapy) and I had my first appointment with my psychologist this Thursday just gone. I didn't know what to expect and was very anxious on the day but my pain management doctor had really recommended this psychologist (who also runs a pelvic pain clinic so knows what she is talking about) so I was somewhat excited about it. I had a few forms to complete and then we sat and talked for about 40 minutes. At the end I felt like giving her a big hug because she enabled me to talk about everything that has been troubling me - not just the endometriosis, not just the infertility, not just the seclusion, but all my other personal issues too. I was really upset from having to talk about everything but I know I have to do that to get past the issues. I see her again in just over a week and between now and then, I have to complete a diary for her and also listen to a relaxation CD for 15 minutes each day. That will be my second of six sessions and then we see where we both feel like going from there. She did say though that I shouldn't do any other counselling as that would work against her work with me (which I had assumed anyway). I've been very down since Thursday and it's been a struggle. I've found I'm more tearful again and I'm thinking more about everything but I feel so thankful that I have found this doctor, my psychologist, because I finally feel like I have found someone who can help me with all my struggles.


Along with all my other hospital trips, we had our second fertility clinic appointment last week. Our doctor ran us through our test results and we came out positively beaming! My blood tests show that my ovaries are healthy and are working as they should be - though I'm still not ovulating. The boy's sperm is well above average and, as you can tell, he's over the moon about that! So we passed our tests and everything is as it should be which is great, great news. From this she has now referred us on to the actual Fertility Clinic (not the sub-fertility clinic which is where we were being seen) and after a course of counselling we will be on our way to starting our little family with IVF treatment! Isn't that just fantastic, fantastic news!? Another good thing is I won't need to have my fallopian tubes checked because having IVF treatment just cuts them out all together, so if the left one is blocked (like they told me in January) it won't matter anyway now. I feel overjoyed and so very blessed that we have this chance. I have read so much now about how you may not match all of the criteria to be put through for IVF, let alone all of those people who cannot afford to have the treatment. We have one course of funded IVF and then if that doesn't work then we will need to pay. At the moment I only know what's on the leaflets they have given us but we have our first planning appointment in just over a week so we should know more then. It still hurts that we have to take this route to having a family and that my body isn't working how it should be, but, nevertheless, we will have a family. I have to keep telling myself that because I know that even with IVF we may still have to deal with ectopic pregnancies, miscarriage or it just simply not working. It's just a case of relaxing and seeing how it goes. It all feels so surreal right now.


I have been battling a little with whether to share our IVF journey on here or not. Since we had our appointment, we've not really discussed it with anyone other than our parents and I've felt like I wanted to keep it secret as others get to do when they are pregnant. But the boy pushed me to continue writing because he is worried I may need support from others while we are going through this. And he's right. Right now especially I really want advice from people who are in the same position as me, or those with endometriosis who have had IVF. If you are one of those people please get in touch because I'd love to know how its been for you. I've read quite a lot on IVF but I suppose it's different for everyone and to be honest, I'm really frightened at the moment. I don't know what to expect and I don't want to be too happy about everything because I know how much stands in the way still. It's such a strange feeling and the boy just tells me to think positively and be happy but I can't because realistically, anything could happen.


We had our little holiday (as you may have gathered from my last post) and that was lovely. I wish I could wake up next to the sea everyday! I've also been on a couple of fishing trips with the boy, my dad and next door neighbour, which have been lovely because I get to sit in peace all day and read and take photos. We cleared my grandma and grandpas house out last week as that has finally sold and that was heartbreaking. But, we got the things we wanted to keep, the things that meant something to us, so our house, currently, is full to the rafters! We've been trying to clear things out and I've slowly been getting things EBay'ed because of it but it takes so long to do! But soon, soon we shall have a clear house again! With all that going on I've been splitting my time mainly between resting and EBay but when that's all done I plan to finally get the shop open - I have 2 big boxes filled with beautiful vintage goods to be sold so far so it needs to be open now, now, now! 


Anyway, there you go, quite a lot has been happening! Apart from that I've been keeping myself to myself and trying to cope with everything that's been happening really. 


Please, please continue to leave your lovely comments and emails because I do read them all. As I said previously, as soon as I've made some headway with this house clearing and the shops open, I can dedicate some time finally to replying to you all - so please don't think you are being ignored!


S.

Wednesday, 14 August 2013

While the boy watches the football...


Hello my lovelies! Thought I'd just check in with you all to see how you are...? I don't think I really have enough news to write a post just yet but, judging by recent posts, I'm sure I'll be able to waffle on about something or other for you all!

As you can probably tell from the photo, me and the boy are currently on holiday. It's so nice to be back down here in Lowestoft, and, more importantly, out of my bedroom! We got here late on Saturday night and so far I've dragged the boy around the little shops and carboots near here pretty much every day, although tomorrow night we are going to this monster truck show thing which should be fun! We are having to take each day as it comes at the moment as I'm in a lot of pain this week. I finished my period just under a week ago now but this pain is terrible. I've even had to start taking my super strong Nefopam tablets (on top of everything else) daily again which I haven't had to do in a long time. I'm getting pretty used to it but it's draining me a lot because it's stopping me from sleeping properly as well. That's the real problem with it - sleep is such a relief from the pain but then the pain keeps waking me up. I just want a break from it!


The pain is probably not being helped by my emotions either. I mentioned in my last update that I'd been struggling with coming to terms with the news from the hospital about our - well, my - fertility issues, but I'm still really struggling with it and, being honest, I could probably spend all day, everyday, crying - if I let myself. I'm so down with it all. I was due to see my psychiatrist (I feel odd saying that!) at the end of July but my appointment was rearranged to the end of August and it's set me a little off course. I hadn't realised, but I'd been kind of grappling on to that appointment, waiting for it so I could set my head straight. But, its not much longer to wait now. I just really need to just talk about all this with someone because I feel like no one understands me right now. I know there are people out there who do understand, my mum certainly does after having years of fertility issues when trying to get pregnant with me, but then she had me and I just have my head set on never being able to have children now. I don't know how to cope with any of this and life seems to just be a massive struggle everyday because of it, and because of the pain I have to live with. Every single little stab of pain is another reminder of my problems and what I'm putting the boy through, and with each stab comes another hit to my mind. Sometimes, I feel like I'm all alone in a big empty bubble with everyone stood on the outside, a busy bustling world looking in on me and a constant noise of people giving advice or comfort when the only thing that could mend this is the one thing I just cannot have. I feel like screaming sometimes, wishing people could hear what it's really like, but, what good would that ever do? All this is turning me in to a very bitter person, a person I never was, and there is nothing at all I can do about it.


It's under a month now until we go back to the fertility clinic and we've done all our tests ready for it. It was quite funny at the hospital actually when we went in to drop the boys 'sample' off. We were giggling like school children and whispering about it to the receptionist when she quite loudly took the sample from us, with a smile, and asked the boy to fill in some details. She must be so used to it but it is a bit strange giving a total stranger a tub of your boyfriends semen! I now just have to go in for my smear test, which is, unfortunately, not until the week before our appointment. I was shocked at how long the waiting list is to get a smear test. I've been very naughty and not been in 4 years now, when I was supposed to go last year. I just hate having internals when I'm in this much pain and it always scares me in case the doctors hurt me more. I just hope it all comes back clear else that's another thing to add to the list... Always looking on the black side!


As for my pain management, I have had a letter through regarding my physiotherapy but unfortunately, I'm on a waiting list - again! I have no idea when that will all come through but I hope it's soon. I tweeted a question earlier asking whether any of you other ladies had been diagnosed with 'endometriosis associated pain' as well as endometriosis, and the replies I had back were so surprising - some ladies even have pain in their knees from the disease! I find it so odd but it's nice to know I'm not alone. Have any of you been diagnosed with this associated pain? I'd love to hear from you if you have.


When we get back from holiday I'm going to be busy eBaying my life away to try and raise some pennies. I've been working hard on setting up a little online vintage shop recently too so I'm also going to get that opened finally. I'm allowed to earn up to £95 per week, I think, before it affects my benefits but I doubt I'll even be making that much at first. I'm hoping to eventually get it up and running fully though so I can have it as my main job, and then,when I'm able to, only have to go out to 'proper work' part time - mainly because I can't ever see myself being able to work full time again. I'll let you all know when the shop's up and running though so you can have a gander. I have quite an array of pretty goods to sell though!


Just before I go, I wanted to say thank you to all of you who have sent me emails or messages about the blog and my writing, and I also want to apologise for not replying. I still have emails in my inbox from last year that I haven't replied to so, to rectify this, once I've got all my bits sold and the shop set up, I'm going to set aside some real time to get in touch with everyone. I feel so awful for not replying but please know that I have read all of your messages and I love receiving them. To know my moany posts are helping some of you really warms my heart and I so needed to hear it all. You, the lovely people who take time to read EMLWY, are the reason I keep writing. 


Anyway, I'm going to go and read some more of my book now while the boy continues to watch the football. I need to have a good wind down and a good nights sleep so I can actually go out and do something tomorrow.


I hope you are all having somewhat pain free days... And thank you for listening to my woes!


S.

Friday, 26 July 2013

The beginning of our big journey.

















Hello beautiful ladies and gents! I went a little off the radar again and apologies for not keeping you all updated. I lost faith in the blog and wanted to completely stop writing because I felt it wasn't helping myself let alone anyone else. But, I am here and I am carrying on. But like I said in my last post, I want to take things back to basics now and find the enjoyment in writing again - instead of feeling under pressure to get lots of posts out constantly. You must get fed up of me constantly saying how much I don't want to write but I find it really difficult sometimes. I was never one of these people to sit on forums or Facebook groups talking about my endometriosis with others because it never helped me emotionally. In fact, still now, I find reading constant posts on Facebook and Twitter etc just wind me up. I know what works for some doesn't always work for others and I believe that to be very true when it comes to talking about this disease also. I love reading people's stories, how they discovered they had endometriosis, what life is like with the disease and what the future holds, but when it's constant talk about something so horrible, well, it just gets me down. But, because I've felt like this, I've also been left feeling like I must be constantly letting all you lovely people down. I'm not an endo sister that posts constant inspirational posts or talks to other ladies all day, every day. Somedays, I'm going through terrible pain and depression and I can't find anything in me that wants to be 'inspirational' - then on my good days, well, I don't want to be brought down. I realise that must sound like the most selfish thing in the world but, if I've learnt anything over the past year and a half, it's that my health is paramount and I must put it first, well before anything else. So I apologise if I don't post pictures of my sorry face and swollen tum every day on Instagram, I'm sorry I don't actively participate in chatter on Twitter or Facebook and I'm sorry once again for losing faith in my blog. Sometimes, I need space from this horrible disease and this is my way of coping. Anyway, I seem to be ranting so let me get back to updating you all on recent events.


June saw the start of mine and the boys fertility journey. Wednesday 19th June was a very big day for us because we had our first appointment at the fertility clinic. We went through our history with our doctor and I explained how damaged my insides were and how my periods were all over the place. Unfortunately, we hadn't been able to get our samples (blood tests for me and sperm sample for the boy) done in time for the appointment - mainly because my period had mucked up so much in May/June - but, luckily, the blood tests I needed were changed so now I just have to have 1 test and then the boys sample. My blood test will be to check if I'm ovulating because, sadly, they don't think I am. I then had to have an internal examination and some swabs taken to check for infections. And then, I had to have the dreaded internal scan! GAH. I've only had one before, when I went in to hospital with my flare-up last year and they are blummin' horrible! I think I got so worked up about it that I made it worse and ended up in tears with the pain. The doctor, her registrar and nurse were so lovely though and were really caring - they were even holding my hand to try and get me to calm down! Unfortunately, it looks like the big mass on my left side, where my fallopian tube, ovary and bowel were all joined together and attached to my abdominal wall, which was all pulled apart during my surgery in January, is now back! I'm pretty gutted that it's gone back to how it was so quickly. But, apart from that, they think my womb looks healthy which is great news. The doctor wants to put us straight through for IVF - on hearing this I burst in to tears again!  - and before the treatment we have to go to counselling together. I also need to continue with my Liaison Psychiatry. We see her again in September, by which time I need to have had a smear test and my blood test, and the boy needs to have got his sample in to the hospital also, and then we will discuss the next steps and about having my fallopian tubes checked for blockages (which they can either do via laparoscopy or with me awake and inserting something in to the vagina - both as bad as each other really!). I was told in January that my left tube is blocked so I'm praying my right tube is fine. Anyway, I'll keep you posted as to what happens next. 

I've been very down since the appointment. It's hard trying to get your head around so many things being wrong with your body - especially with the not ovulating part. My body should do this naturally and yet mine isn't. I just feel completely broken and useless. And so very guilty. Guilty for having to put the boy through all this. Guilty for not being able to give him a child naturally. Guilty for being so completely useless. But, he's still here. I tried to push him away, on more than one occasion, but, thankfully, he won't go anywhere. I'd be lost without him. Just nothingness. 


June was a good month socially because not only did I have my first night out in over 6 months, but we also went to Download Festival and spent a beautiful day celebrating our friends Laura and Chris' wedding. Download was wonderfully epic as usual but it's hard work. This year it was headlined by Slipknot, Iron Maiden and Rammstein. We didn't do as much walking as last year (mainly because we knew our way around this time and didn't have to listen to silly stewards sending us the wrong way!) but it rained pretty heavy on the first two days and, with there being little seating, standing all day took it's toll. By Monday I was completely dead to the world! We managed to find a little tea tent called Motley Brew where we frequented more than anywhere else because they did 'proper' cups of tea and we also managed to get some of Iron Maidens Trooper beer before it sold out (so my one alcoholic drink of the weekend was pretty special!)! I can't wait for next year now but I need to get saving! This years and last years tickets were paid out of my redundancy money so I need to gather some funds to pay for this ticket! As for our friends wedding, it was an absolutely lovely day. I saw friends that I hadn't seen in months, made new friends and even had a little boogie at the end of the night all on top of the moving ceremony and summery location! Congratulations Mr and Mrs. Bumpus!


I had my first pain management appointment a few days ago. After having weeks of being very, very, down and feeling like there was no hope, I came out of the hospital with a new found punch of positivity. The doctor I saw was lovely. She put me completely at ease and was very easy to talk too. She was also commenting on the trousers I was wearing so we were laughing about her wanting to steal them! I had no idea of what to expect other than what the Liaison Psychiatrist had said about getting help with pain relief to enable me to get back to work. I explained to the doctor whats been happening with my health, what treatments and surgeries I've had in the past and exactly where my pain is and how often it occurs. She then did a full examination. I had to strip down to my pantaloons (thank goodness I'd worn nice knickers!... Though they were see through at the back which I don't think the nurse must have appreciated! What a sight!) and move in different ways, like trying to bend to touch my toes, bending my body sideways and arching my back as well as trying to do a little sit up with her poking my tummy at the same time (ouch!). I then had an internal examination too. She was very gentle but she could instantly feel how tender my muscles were. After the examination, she talked through her findings and has diagnosed me with a condition called "endometriosis associated pain". She explained to me that after having had so much endometriosis removed in my surgeries, the types of pain I am having with going to the toilet and a lot of pain in the muscles, along with the pain being constant, all point to it not actually being my endometriosis that is causing the pain but this endometriosis associated pain, which she sees in many women with endometriosis, but not all of them. She also mentioned something about my pain receptors splitting as they are going up to my brain and half off them coming back down in to the muscles. She told me that in the examination I had found doing a sit up with her pressing on my tummy far more painful than doing the sit up without her pressing on it and also, internally, she hadn't touched anywhere near my endometriosis sites, just the muscles on entry. This all points to the same diagnosis. So, she wants me to see a physiotherapist to help my core and a psychologist to teach me relaxation techniques (I feel proper mental now seeing a Psychologist and a Psychiatrist - on top of the counselling we'll be having pre-IVF!). She also suggested I get back in to swimming by doing a width of the pool at first and increasing the exercise from then on. For now I have to stay on the same medication. She wanted to put me on something else also but since we are trying to conceive she suggested I didn't start it as it would be hard to come off of. I see her again in February next year and I would assume that by then she wants to be seeing results. I'm really excited about all this. I feel if I can get rid of this extra pain then I can get back to how I was pre-flare-up and be back to 'normal'!


So, now it's just a case of waiting for all my appointments to come through and to get working on this broken body of mine.


As for my benefits, I won my second appeal also! I was put back in to the support group status in June and since then they've back paid me to March and put me back up to the full amount of weekly payment. Unfortunately, several weeks ago I had yet another 20 page questionnaire from them because my next medical assessment is due by the end of July. Ridiculous isn't it!? I've spent the last 5 months fighting the outcome of my last assessment and now it looks like I have to go through the same thing all over again. At least this time I can go in and show them that some progress has been made with regards to treatment. I'll keep you posted - I can feel a rant coming on so I need to get off this subject quick!


We finally got Bunty and Grandpa's gravestone in place and so we had a little family gathering at the cemetery and few weeks ago for it. It looks beautiful and afterwards we had a lovely barbecue in the sunshine to celebrate.


I went to the Royal International Air Tattoo at RAF Fairford last weekend with my parents and the boy. I am such a massive plane geek and I love watching them. The weather, laughably, was a little cool on the day (it's been an incredibly hot heatwave the last few weeks over here in England - just typical that the one day we want to sit out in it all day long, the sun goes in to hiding!), but we took a picnic and it was a lovely day. On top of seeing plenty of jets and helicopters we also got to see the Airbus A380 perform a special flight flanked by the Red Arrows and it was absolutely amazing. I also couldn't believe some of the tricks the Apache and Chinook helicopters were able to perform. The Chinook especially looked like it was going to drop out of the sky! They also had a special commemorative flight of a Lancaster, Hurricane and Spitfire for the 50th anniversary of the Dambusters and all those who have lost their lives in action which was very moving.


Me and the boy are off on a little holiday in August to my parents caravan again. We can't wait to get away for a bit and be near the sea. It's such a beautiful area of the country and there is so much to see and do nearby. Not long now!


Anyway, this post has taken me weeks to write and the boy finishes work soon so I better go and make myself pretty so he can chauffeur me in to town for a slow wander around! I hope you are all well and hopefully coping as best you can... I promise to post again as soon as I can!


S.

Thursday, 30 May 2013

Break time over.

















First and foremost, before I start waffling on about anything else, I must apologise for my recent absence and lack of work on the blog. I've had a few weeks away from writing because I was getting a little stressed out with everything that was happening in my personal life and trying to keep up with posts on EMLWY was just adding to it. I needed a break away from all things endometriosis (minus everything endometriosis that I have to live with day to day!) and now I feel ready to catch up with things. So, I'm sorry everyone... Especially for just disappearing without any prior warning but sometimes you just need to get away from things to clear your head.

I haven't written a personal post since the middle of April so I think the best place to start off is where I left you all last time...

On my last post, Is this how happy feels?, I spoke about my hospital appointment and having been referred on to the fertility clinic. Well, we've got our date through for the clinic now and we see our doctor in three weeks time, on Wednesday 19th June. It's all very exciting but I am nervous at the same time. This is a massive thing and I'm praying it works for us. So for now, we just have to wait and see.

My friend, Lou, and her boyfriend, the boys little brother, Scott, lost their baby, as I mentioned before. But, on the day I wrote about it all, Lou ended up in hospital again as the pregnancy fully miscarried. They've been through a pretty traumatic time but the miscarriage has caused no damage to Lou's insides which is great news. It's just a case of taking each day as it comes now and trying to work through it all together.

Me and the boy went to see Saxon in concert again in April as I'd bought him tickets for his birthday. It was the third time I've seen them now and they were fantastic as always. It's now only three weeks until Download Festival so I'm hoping that I'm going to be OK on those days and that we'll have good weather this year! Luckily, as long as I'm not on my period, I should be fine as it isn't too much walking and if it's sunny we'll just be sunbathing for most of the time anyway!

Ooh, do you want to hear all about my benefits kerfuffle!? Well, I won my appeal! Great news, ha!? They decided I wasn't fit for work and put me back in for Employment and Support Allowance. Unfortunately, instead of being put in to the Support Group I was in from May 2012-March 2013, I've been put in to a Work Related Activity Group. The wording on the letter was terrible and I really had no idea what this meant until I received another letter instructing me to attend an interview at my local Jobcentre Plus at the end of April. That day was a bad pain day and after a £12 taxi journey I arrived at my interview, only to be told very little, other than I was being referred on to a work training company who are going to put me into work! I would be earning up to £90 a week without it effecting my now reduced amount of benefits (I previously got £119 per week while in the Support Group whereas in the Work Related Activity Group I get £99 per week) and it would all be suitable for me to undertake. Even writing this now, I am infuriated!!! I was basically being sent back to work to earn nothing because my taxi costs there and back would cost me £24 per day - a total of £120 for 5 days work!! So I'd actually be losing money for going to work - never mind the fact that they hadn't taken anything I had said about not being able to work due to pain in to consideration. I explained everything to the adviser who was interviewing me and he suggested that I appeal again and ask to be put back in to the support group. I left the Jobcentre almost in tears. I was in agony, I'd had to get my mum to accompany me in to town to help me and had to spend £24 in taxi costs for this. So, that night I wrote out my second appeal letter and got this all sent off by the end of that working week. So far, all I know is that they have received my appeal paperwork, I don't yet have any word on the outcome. I'm just fed up of fighting for something that I should be supported on... Especially when there are so many people in this country who have nothing wrong with them, yet get so much money given to them from the government. Where is my help!? Anyway, that's all I'm going to write on the subject right now because I can feel my blood starting to bubble away and I really don't want any more stress right now! I'll keep you all informed as and when I hear anything though. I just pray it's good news... Maybe I should just go to them for further treatments for my endometriosis, since they seem to know so much about it... OK. Stopping now!

My papa celebrated his 65th birthday at the beginning of May and we all went out for a massive family meal at Marco Pierre Whites in Nottingham. It was a beautiful meal and we all got a little tipsy... Including me! I had half a bottle of cider and 2 large glasses of wine and that was me done in! I should not have drunk that much because it made me feel really bad that night! That weekend, we also went to the rugby to see Leicester Tigers pummel London Irish 32-20! Papa also managed to get us corporate tickets so we had dinner and drinks before and after the game along with free gifts and padded seating - which my bum was very grateful for!

As you might have noticed from the photos above, me and the boy went away for a little holiday in the second week of May. We went to Butlin's in Skegness for a few days and had a lovely time. We celebrated our three year anniversary while we were there and had a romantic seaside dinner of chips, fishcake and mushy peas, washed down with a can of pop!... We know how to do romance! I got myself a new bit of ink also, a little Sylvia Plath quote on my leg which I am absolutely in love with! Butlin's was a little overridden by children and more than a little expensive, but we got out each day to see the sights and really enjoyed ourselves. 

We went to the rugby again when we got back home from our break and (again) watched the mighty Leicester Tigers thrash their opponents London Harlequins 33-16. This took us Tigers to the final at Twickenham, this past weekend, which saw them win the premiership against Northampton Saints 37-17! I've really gotten in the rugby over the last year and I'm quite impressed that, finally, at the age of 29, I'm understanding a sports game!

Apart from all that, I've just been either at home, resting, or having little wanders in town. I recently managed to make it in to Loughborough by myself, on the bus! A massive feat! But then, the boy had to pick me up and I spent the next few days in bed recovering! The weathers picked up a bit recently (minus the odd days of heavy rain!) so we've been able to have barbecues and go for slow walks in the sunshine. I just hope the weather continues to pick up so we can have a nice warm summer!

Me and the boy have now been living together for almost 2 months and it's all going swimmingly. It's certainly nice to fall asleep and wake up next to him every day. I just need to get back to work so we can get our own place!

I have noticed that things with my endometriosis have gotten slightly better. Only slightly but that's better than nothing at all, like it was before! My periods have been heavy and painful still but, I think, they've been a little less painful and heavy than before. They had also been starting to get in to a pattern of being early - until this month anyway... I don't know what the heck's happening with my period right now! I'm not due until next week but I've been spotting lightly, on and off, since last week. Obviously, you all know what my first thought was, but I don't think it's that. I think it is just my period being a pain in the ol' butt! I have noticed, however, that whereas the pain during my period has eased slightly, the pain I am in the week after my period is terrible. I have been in so much pain the week after the last few months that during these times I've been almost completely bed bound. I even had to take some Nefopam on top of my normal Tramadol and Ibuprofen daily mixture last month. As you know, the fertility treatment is the next step for me so for now I just have to put up with the pain.

Luckily, however, I have now received both my Pain Management and Liaison Psychiatry appointments which are both in the last two weeks of July! I'm so excited about finally getting my Pain Management date through though - even if I have got a bit of a wait still! I'm so hoping they can help me - even just to get me off this Tramadol which I am really starting to hate now. I am twitching like mad all the time and I hate how it makes my body feel. I can't even describe it - it just feels horrible.

So, there you have it. I'm having a lazy week at the moment because I am absolutely beyond exhausted! I even had to have an afternoon nap yesterday which I never, ever do! I'm hoping that I'm going to be OK for the weekend as I've talked the boy in to taking me over to Leicester for a wander on Saturday and then on Sunday we are going for a meal with the boys family to celebrate Lou's birthday and his Mama and Papa's 30th wedding anniversary.

I have quite a lot of work to get done on the blog and some things are going to be changed a little, mainly to take a bit of pressure off me really. I want to enjoy EMLWY, not feel like I'm chained to it - which is how I was feeling before the break! I have a few stories to go up still (apologies if you've sent a story over and I've not contacted you yet, I'll be getting around to it all soon!), but if you haven't yet sent your story over then please feel free to email me at shireen.emlwy@gmail.com. Also, remember folks that Google Reader will be binned soon so please head on over to Bloglovin' and follow EMLWY through that! Anyway, keep an eye out and I'll be back soon!... Ta ra for now!

S.

Saturday, 20 April 2013

Celebrities with endometriosis.


What do all these women in the public eye have in common? You might be surprised to know that they all have endometriosis...


Image courtesy of https://speakerpedia.com/speakers/anna-friel
Anna Friel is a British actress. She was diagnosed with endometriosis when she was 28, after being rushed to hospital with a ruptured ovarian cyst. She says "one doctor told me it would be very hard if I left trying for a baby beyond the age of 30, which at the time was far from an ideal situation". She gave birth to daughter, Gracie, in 2005.


Image courtesy of http://annabelcroft.com/
Annabel Croft is a British former professional tennis player and current radio and television presenter. She had surgery for endometriosis in 1992 and went on to have 3 children. After her doctor found a cyst on her ovary in 2003, she has visited a homeopath and found her cyst reduced in size after taking the prescribed remedies. She now visits her homeopath every 6 weeks for a full 'MOT'. Annabel has formed Diary Doll with friend and fellow television presenter Carol Smillie, a company specialising in 'period pants'. 


Image courtesy of http://www.fanpop.com/clubs/whoopi-goldberg/images/31581545/title/whoopi-goldberg-photo
Whoopi Goldberg is an American comedian, actress, singer-songwriter, political activist, author and talk show host. She found out she had endometriosis in the 70's and was given medication for the disease which worked. She has one daughter, Alexandria, born in 1973.


Image courtesy of http://www.telegraph.co.uk/news/celebritynews/11934164/Anthea-Turner-I-always-do-the-Crackerjack-test-on-younger-men.html
Anthea Turner is a British television presenter and media personality. She has said the pain of endometriosis had been unbearable at times. "If someone was to give me a gun I would shoot myself, it really can get that bad". She has tried acupuncture in the past but was eventually told her endometriosis had cleared up spontaneously. To date, Anthea has undergone five unsuccessful IVF treatments.


Image courtesy of http://irishamerica.com/2012/05/what-are-you-like-karen-duffy/
Karen Duffy is an American model, television personality and actress. She was diagnosed with endometriosis in 1998. Karen says the cramps ''felt like a boa constrictor wrapped around my abdomen". She now controls her endometriosis with Lupron and reports no side effects from the drug. ''I have more energy now, and maybe it's because I have less pain'' she says. She has one son, Jack.


Image courtesy of http://www.bollygraph.com/events/padma-lakshmi-bursts-out-of-her-dress-and-disspoints-her-fans/25852/
Padma Lakshmi is an Indian American author, actress, model and television presenter. She also co-founded the Endometriosis Foundation of America. Padma suffered with pain for more than 20 years and was told it was 'all in her head' before she was diagnosed with endometriosis. She had surgery when it was revealed she had 2 cysts on each of her ovaries and was also put on to birth control. She gave birth to her daughter, Krishna, in 2010.


Image courtesy of http://theyesng.com/all-the-men-who-dated-and-dumped-nike-oshinowo/
Nike Oshinowo-Soleye is a Nigerian business woman, socialite, entrepreneur and former pageant director. She has battled with endometriosis since 13 years old and has lost count of how many surgeries she has had for the disease. She says she is now looking forward to the menopause. At the age of 47 she became a mother to twins via an American surrogate.


Image courtesy of http://nbc4i.com/2016/03/18/dolly-parton-kenny-roger-keith-sweat-headline-ohio-state-fair-concert-lineup/
Dolly Parton is an American singer-songwriter, actress and author. It was during a 35 date tour of the US and Canada in 1982 that she was taken in to hospital (aged 36) to have a partial hysterectomy due to endometriosis. She later faced a period of depression and suicidal thoughts from not being able to have children.


Image courtesy of http://www.lukecrisell.com/tracey-emin/
Tracey Emin is a British artist. Tracey developed severe stomach pains and when she collapsed the next day, was rushed to hospital where it was discovered she had endometriosis. She says "I couldn't walk because of the terrible pain in my hip from all the swelling". Tracey revealed in 2012 that she had now lost her libido after an operation for severe endometriosis brought on by the menopause. She said she does not have a sexual relationship with her new boyfriend and has never wished to have children.


Image courtesy of http://www.salon.com/2012/12/31/hillary_clinton_hospitalized_with_blood_clot_2/
Hillary Clinton is an American politician and served as the 67th Secretary of State, Senator for New York, First Lady of the United States and First Lady of Arkansas. She had trouble conceiving her only child, Chelsea, born in 1980, due to endometriosis.


Image courtesy of http://www.instyle.com/celebrity/emma-bunton
Emma Bunton is a British pop singer-songwriter from the Spice Girls, actress, model, television and radio presenter. She was diagnosed with endometriosis at 25. "I remember the doctor saying at the time: 'Fifty per cent of women with endometriosis go on to have children'. I thought, only 50 per cent!? It scared the life out of me". She has two sons, Beau, born in 2007 and Tate, born in 2011.


Image courtesy of http://www.wallpaperpimper.com/wallpaper/download-wallpaper-Aya_Matsuura-size-1024x768-id-33231.htm
Aya Matsuura is a Japanese pop singer. In a bid to raise awareness, Aya announced to her fans that she had the disease in 2011 and had been suffering with pain for the last 4 years. In 2009 she took a 3 year career break and now performs on a level suitable to her needs. Aya has one daughter, born in 2014.


Image courtesy of http://shazsbookboudoir.blogspot.co.uk/2012/08/author-interview-anna-mcpartlin.html
Anna McPartlin is an Irish author. She first suffered problems with her endometriosis in her early 20's. "I began to suffer with kidney and bladder problems and spent a lot of time in and out of hospital undergoing treatment and investigations. From the initial symptoms, it took at least eight years for me to be diagnosed with endometriosis and this only happened due to the influence of my aunt who was a gynaecological nurse and believed my problems sounded like endometriosis. She pushed me to move from a kidney specialist to a gynaecologist". A diagnostic laparoscopy revealed she had endometriosis on her bladder, uterus, abdominal wall and fallopian tubes. The surgeon removed the scar tissue and she experienced a year of no pain or bladder issues. Unfortunately, when Anna and her husband started trying for children, they found they were unable to conceive and since then, they have tried one course of IVF and countless other treatments including aromatherapy, acupuncture and dietary changes and are now trying to conceive naturally again. "I had a second operative laparoscopy a number of years ago and although my symptoms are ongoing, I am so much better than I was before diagnosis" she says.


Image courtesy of http://www.usmagazine.com/celebrities/jillian-michaels
Jillian Michaels is an American personal trainer and media personality. Jillian struggles with infertility due to endometriosis having blocked her fallopian tubes, but she has two children, Lukensia and Pheonix, one of whom she has adopted and another that her partner gave birth to. She says she learned very early on that she had endometriosis and polycystic ovaries.


Image courtesy of http://www.sheknows.com/entertainment/articles/1122951/kirsten-storms-break-from-general-hospital-is-it-due-to-her-acne-or-her-ex
Kirsten Storms is an American actress. She was diagnosed with endometriosis in 2011 while playing the role of Maxie in the TV series General Hospital. She had to take a year off from the show and returned in 2012. She has one daughter, Harper Rose, born in 2014.


Image courtesy of http://monicastorrsmakeup.blogspot.co.uk/2011/10/emma-forbes-for-rachels-organic-yogurt.html
Emma Forbes is a British radio and television presenter. She was diagnosed with endometriosis when her and her husband started trying for children. After having scans and laparoscopic surgery, her gynaecologist told her something she says she will never forgive him for - that she could never have children. She was put on to Clomid and within a year fell pregnant. Since the birth of her daughter, Lily, Emma has had 7 more laparoscopic surgeries. After her son, Sam, was born, her endometriosis got even worse and she later had her ovary and fallopian tube removed. She now controls her endometriosis with a mixture of acupuncture and a healthy diet.


Image courtesy of http://newspaper.li/julianne-hough/
Julianne Hough is an American professional ballroom dancer, singer and actress. She was starring in Dancing with the Stars in 2008 when she knew her body had taken all it could. She was in agony  but ignored producers please to go to the hospital. The next morning Julianne had an ultrasound which revealed she had a cyst on her left ovary and a lot of scar tissue outside of her uterus which had spread to her appendix and right hip. She had laparoscopic surgery a week later, leaving the show mid season. It was found the endometriosis had also spread to her fallopian tubes and bladder. Julianne believes she started suffering with pain from the disease around 2003. Her mother and sister also have endometriosis.


Image courtesy of http://www.cinemagia.ro/actori/susan-sarandon-2119/
Susan Sarandon is an American actress. She was diagnosed with endometriosis in 1983 after suffering from pain, irregular bleeding and fainting. She was told that if she ever wanted children she would have to have surgery and was put on to birth control pills and painkillers. She has three children; a daughter, Eva, born in 1985 and two sons, Jack, born in 1989, and Miles, born in 1992.


Image courtesy of http://www.virginmedia.com/music/pictures/awards/fashion-rocks-2007.php?ssid=11
Louise Redknapp is a British singer, television presenter and media personality. After trying for more than two years for a baby, Louise was told by her doctor that she would have to go through a lot to have children, and still might not be successful. She says, "Finding out you can't have children takes a bit of your femininity away. It's an odd feeling, like you've completely under-achieved, which is not what I'm good at dealing with". Louise had laser surgery for the endometriosis and was about to embark on IVF treatment when she discovered she was pregnant with her first son, Charley, born in 2004. She gave birth to her second son, Beau, in 2008.


Image courtesy of http://3oneseven.com/26/beautiful-marilyn-monroe/
Marilyn Monroe was an American actress, model and singer who was 36 when she died. She never had children though fell pregnant numerous times. All of her pregnancies ended in miscarriage and, reportedly, at least one ectopic pregnancy due to her severe endometriosis. There is a rumour that she went in to one surgery with a note taped to her stomach, pleading with the doctors to not remove her reproductive organs. Although there is much mystery surrounding her death, many think it is indirectly linked to her endometriosis. The disease caused her to become addicted to painkillers which in turn aggravated her psychological problems. Her x-rays from one of her surgeries for the disease fetched $54,000 at auction in 1954.


Image courtesy of http://tracthertrailher.com/tia-mowry-releases-yoga-dvds/
Tia Mowry is an American actress, singer and author. She was diagnosed with endometriosis when she was 27 after suffering from severe cramps since she was 21. She had surgery but unfortunately, 2 years later, the pain returned. She had a second surgery and then started The Body Ecology Diet. After one year of being on the diet, she was pregnant and her son, Cree, was born in 2011.


Image courtesy of http://www.fanpop.com/clubs/katrina-kaif/images/24519808/title/katrina-wallpaper
Katrina Kaif is a British Indian actress and former model. She was diagnosed in 2009 and underwent laparoscopic surgery for the disease.


Image courtesy of http://www.news.com.au/national/blessed-ada-sets-glowing-example/story-fndo4bst-1226431421786
Ada Nicodemou is a Greek Cypriot born Australian actress. She and her husband tried to conceive naturally for a year and when that didn't work they completed a single course of IVF treatment which was successful. Her son, Johnas, was born in 2012. Ada has been open from the start of her journey and hoped that her story would help other couples struggling with fertility issues.


Image courtesy of http://stjamestheaterreview.com/
Stephanie St. James is an American actress and singer. Diagnosed with endometriosis in 2003, after suffering for over a decade with painful symptoms, Stephanie is an advocate for the disease after undergoing 6 surgeries.


Image courtesy of http://es.drama.wikia.com/wiki/Cynthia_Koh
Cynthia Koh is a Singaporean actress. She was diagnosed with endometriosis in 2012, after having unusually long periods. A check by her gynaecologist revealed she had two 2cm blood cysts on her ovaries and underwent keyhole surgery to remove these.

Image courtesy of http://www.dailyrecord.co.uk/lifestyle/property/andrea-mclean-interior-design-tips-5259171
Andrea McLean is a Scottish television presenter. She was diagnosed with endometriosis at 28 and underwent fertility treatment to have her son, Finlay, who was born in 2001. She had a blocked fallopian tube and cysts on her ovaries and was put on Clomid before starting IVF but fell pregnant (after two years of trying to conceive) before starting the main IVF treatment. She gave birth to her daughter Amy in 2006 after conceiving naturally.



Lorne Spicer is a British television presenter. She was diagnosed with endometriosis when she had problems trying to conceive but after a series of operations and treatments, was told she was clear of the disease by doctors. She has one son.


Image courtesy of http://www.itv.com/presscentre/ep4week10/best-walks-view-julia-bradbury
Julia Bradbury is a British television presenter. She was diagnosed with endometriosis in 2006 during a routine check up and following on from this had laparoscopic surgery for the disease. Her son, Zephyr, was born in 2011 and in 2015 she gave birth to twin girls, Xanthe and Zena, who were conceived via IVF treatment.


Image courtesy of http://www.elisabethoas.com/
Elisabeth Oas is an American actress. She was diagnosed with endometriosis in 2009 after encountering pain during her second pregnancy. She also suffers with interstitial cystitis and pelvic floor dysfunction. Elizabeth founded and co-hosts a radio show/podcast called 'The Pelvic Messenger' which discusses issues surrounding chronic pelvic pain, diseases, syndromes and treatments.


Image courtesy of http://www.hollyrubenstein.co.uk/portfolio/cyndi-lauper/
Cyndi Lauper is an American singer, song-writer and actress. She had her son, Declyn, in 1997. Her memoir tells that "she became famous, then gravely ill with endometriosis".


Image courtesy of http://blogs.villagevoice.com/forkintheroad/2010/09/nikki_cascone_t.php
Nikki Cascone is an American chef, restaurateur and former contestant of Top Chef. She suffered for two years before she was diagnosed with endometriosis. She has laser surgery and fell pregnant soon afterwards. Her son, Jackson, was born in 2011.


Image courtesy of http://thecelebritycafe.com/interview/mary-joe-fernandez-09-22-2010
Mary Joe Fernandez is an American former professional tennis player. She had suffered with painful cramps in her pelvic area since around the age of 14 but, although they were a nuisance, they hadn't gotten in the way of her career. In 1993, the pains worsened and surgery confirmed she had endometriosis. The surgery was successful and Mary Joe was put on to medication for the disease. She was able to return to tennis within a few months but the medication made her susceptible to illness and she struggled to keep up. "I had been playing really well", Mary Joe says. "I was about to make a big breakthrough. I was ready to challenge for No. 1 in the world. And then, boom, the endometriosis. I didn't know if I'd ever be able to play again. I thought I was going to lose everything I'd worked for". While out with injuries, Mary Joe has used her time to create awareness of the disease. She has two children, Isabella, born in 2001 and Nicholas, born in 2004.


Image courtesy of http://en.wikipedia.org/wiki/Queen_Victoria
Queen Victoria was the monarch of the United Kingdom of Great Britain and Ireland from June 1837 until her death in January 1901. It is rumoured that she suffered form endometriosis and was heard to have said that the only time she felt good was while she was pregnant. Some say this explains why she had so many children - 9 in total, though it has been revealed that she also suffered from both prenatal and postnatal depression, hated her children and was not in the least bit maternal. "Queen Victoria liked sex, but she didn't like the result".


Image courtesy of http://www.nbc.com/days-of-our-lives/about/bio/deidre-hall
Deidre Hall is an American actress. Originally thinking she would easily conceive, Deidre underwent six rounds of artificial insemination before being diagnosed with endometriosis. When this tissue was removed surgically, she though she had found a cure for her inability to conceive. She had six courses of IVF over a nine month period, but, unfortunately, none of them took and one even put her into a brief coma. In 1989, Deidre tried IVF-gestational, a procedure where a woman's egg and her spouse's sperm are united in the lab and the embryo is then injected in to the uterus of a surrogate. The result, again, was failure. She was unable to try IVF again as her body couldn't take it. In 1991, Deidre found a surrogate and after two attempts at artificial insemination, the surrogate announced she was pregnant. Robin, the surrogate mother, gave birth to Deidre's son, David, in 1992. Robin later went on to give birth to Deidre's second son, Tully, in 1995.


Image courtesy of http://www.celebritynetworth.com/richest-celebrities/actors/jayne-kennedy-net-worth/
Jayne Kennedy Overton is an American actress and former sports television presenter. She was diagnosed with endometriosis in the early 80's. She was filming an exercise video when her pain became so debilitating she wasn't able to do any sit ups and later collapsed. "I was in pain all the time. Sometimes I would be standing in the kitchen, lift the top off a pot and pains came in my stomach", she says. "They were not dull aches, they were all sharp pains. It was difficult to walk and certainly almost impossible to exercise". She tried the birth control pill and when it didn't work, her doctor advised her to get pregnant. "I was really lucky. Within two months I was pregnant. The pains stopped, and it went away. I was pain free during the entire pregnancy and while I breast fed. Two months after I stopped breastfeeding, the pain came back". Jayne had three laparoscopic surgeries then tried Lupron as well as other test drugs and treatments. Inevitably, the disease returned and the only time she experienced any extended remission was during a second pregnancy and subsequent breastfeeding. When she got pregnant for the third time, she decided to have a cesarean section and total hysterectomy after the birth. She hasn't suffered with the disease since.


Image courtesy of http://hollywoodlife.com/celeb/bethenny-frankel/
Bethenny Frankel is an American television personality, entrepreneur and author. Bethenny revealed this year that she suffers from endometriosis. She has one daughter, Bryn, who was born in 2010, but suffered a miscarriage at 8 weeks during her second pregnancy - though she blamed it on herself and her age rather than her endometriosis.


Image courtesy of http://onwardstate.com/2012/10/02/chaz-bono-coming-to-penn-state-to-promote-coming-out/
Chaz Bono is an American transgender advocate, writer and musician. He is the only child of Cher and Sonny Bono. For years, Chaz battled a substance abuse problem when he became dependent on painkillers while suffering from endometriosis. He reached sobriety in 2004 and later in 2005, had a hysterectomy for the disease. Chaz (born Chastity) underwent female to male gender transition between 2008 and 2010 and in 2010 legally changed his name and gender. 


Image courtesy of http://www.huffingtonpost.co.uk/2012/10/02/sir-anthony-hopkins-shares-classic-brit-glory-andre-rieu_n_1933718.html
Myleene Klass is an British singer, pianist, media personality and model. Her first child, daughter Ava, was born in 2007. During a three year struggle to conceive her second daughter, Hero, Myleene was told she had endometriosis. Ironically, it was probably caused by her previous pregnancy. Myleene started investigating IVF. "I can see how things like that can bring a couple to the brink", says Myleene. "Everything becomes so mechanical". Myleene was about to start treatment when her doctor advised her to give it three more months. "I broke down in tears when he told me that", she says. "It had been years already". But amazingly, within a few weeks she was pregnant. Hero was born in 2012.


Image courtesy of http://www.poptower.com/michelle-ang-picture-45118.htm
Michelle Ang is a New Zealand film and television actress. She had begun to notice changes in herself when she became extremely lethargic, depressed, had back ache and bloating, along with a urinary tract infection. MIchelle thought it was initially a kidney infection and after a late night trip to A&E in New York, America, and three courses of antibiotics left her feeling no better, she agreed to visit her family doctor back home in Wellington, New Zealand. She was told these were the effects of her getting older and, feeling demoralised, visited a urologist and a kidney specialist where all her tests came back clear. Michelle bumped in to an old school friend by chance a few weeks later, and it was suggested she visit a gynaecologist. The gynaecologist identified that she was likely to be suffering from endometriosis and, after surgery, MIchelle was finally diagnosed with the disease.


Image courtesy of http://hdw.eweb4.com/out/475303.html
Emily Robison is an American singer, songwriter and a founding member of the female country band the Dixie Chicks. After six months of trying to conceive, Emily went through various tests. Another year passed without success and Emily underwent a laparoscopy which is when she was diagnosed with mild endometriosis. After two years and four rounds of IVF, her son, Augustus Charles, was born in 2002. After another 2 rounds of IVF, Emily fell pregnant with twins, Julianna Tex and Henry Benjamin, who were born in 2005. Her fourth child, Violet Isabel, was born in 2012.


Image courtesy of http://www.telegraph.co.uk/culture/books/11910033/Feminists-abused-my-mothers-suicide-says-Sylvia-Plaths-poet-daughter.html
Frieda Hughes is a British poet and painter. She is the daughter of poets Sylvia Plath and Ted Hughes. In the late 90's, Frieda underwent a series of operations for the treatment of endometriosis. "It crawls up through the groin", she write in one of her latest poems. "Nail hooks pick out steps in soft red, seeking places to implant...". She has described the disease as having caused "unmitigated agony".


Image courtesy of https://www.rottentomatoes.com/celebrity/melissa_holliday/biography
Melissa Holliday is an American actress, singer and model. She was diagnosed with endometriosis in 1995 and was put on to a course of Zolodex. The drug did not relieve any pain for her and although she asked numerous times, the doctors maintained the treatment while she felt her condition was worsening. After being referred on to another hospital she says, "they’d given me so many drugs, I didn’t know if I was coming or going". She was effectively driven out of her mind through chemical bombardment, and was told she would need electric shock therapy - she was told that if she didn’t consent, she would simply be locked up and not permitted to leave. Finally, at the end of 44 days, 9 shock treatments later, Melissa ran out of cover on her medical insurance and was released from hospital. She was unable to leave her house for 6 months, was unable to drive and effectively lost her career. She went back home to live with relatives and started claiming disability payments. In October 1996, Melissa filed a much-publicised lawsuit against the hospital and doctors whom she feels ended her career through their gross negligence and total mistreatment of endometriosis. Eventually, she received the medical care she needed and obtained some relief from the disease - which should have come much sooner. 


Image courtesy of http://www.indiepixfilms.com/creator/13863
Gloria LaMorte is a film writer and director. She wrote and produced the award winning short film, "Details", which was based on real life events. Gloria played the lead role, a woman burdened for years by endometriosis who is driven to near suicide from the pain.


Image courtesy of http://www.myspace.com/juelc/photos/45829072
Juel Casamayor is an American model, television presenter and actress. She has battled endometrial cancer, fibroids and endometriosis.


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Tori Amos is an American pianistsinger-songwriter and composer. She has suffered with endometriosis for half of her career. Tori has had repeated surgeries for the disease and had her fallopian tubes removed after a cyst was discovered. After suffering three miscarriages, her daughter, Natashya, was born in 2000.


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Meg Cabot is an American author. She was diagnosed with endometriosis in 2007 and talks about her stuggles with the disease in her online diary.


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Yuka Murofushi is a Japanese discus and hammer thrower. She had an endometrial polyp removed in March 2004 and further surgery for endometriosis in November 2009. Yuka still suffers from the endometriosis and the side effects of her medication. She has been unable to regain her pre-surgery performance levels.


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Lizzie O'Leary is an American journalist. She first suffered with abdominal pains at the age of 14, but it was only after surgery at 35 that she was diagnosed with endometriosis. Although she questioned her gynaecologist for years about having the disease she was always told that she was fine. She was misdiagnosed with a hernia and ovarian cysts before her official diagnosis in 2011. Concerned with fertility issues, she froze her eggs. After a course of hormone therapy she thought she was clear of the disease and took a prestigious role as a CNN correspondent, but soon was struggling with the effects of the endometriosis. She stepped down in 2012 after a leave of absence. "I got the amazing chance to be a CNN correspondent, but my body just wasn't capable of doing that. But it’s also been this very strange gift. For so long, I defined myself as a journalist, and in the time when I've been sick, I've learned to define myself as a daughter and a sister and a girlfriend and an intellectual". After further surgery, Lizzie now treats her endometriosis with a combination of physical therapy, acupunture and an IUD.


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Alexandra Wentworth is an American comedienne, actress and author. She has two daughters, Elliott and Harper. There is little online regarding her struggles with the disease though she did proclaim the fact she has endometriosis to the world on her Twitter in 2012.


Image courtesy of http://www.guardian.co.uk/books/2012/oct/17/hilary-mantel-if-suffering-can-make-pay
Hilary Mantel is a British author. She was diagnosed with endometriosis at 27 after suffering with bad periods from the age of 11. Doctors were convinced that it was all in her mind and had duly treated her as a psychiatric case. Hilary was convinced it was endometriosis and after surgery, her doctors confirmed it was endometriosis - and they had had to remove her womb, ovaries and even part of her bowel. "When women apes have their wombs removed", she wrote in her memoir, "and are returned by keepers to the community, their mates sense it and desert them. It is a fact of base biology; there is little kindness in the animal kingdom, and I have been down there with the animals, grunting and bleeding on the porter's trolley. I was 27 and I thought I could have a baby. I was free in the matter, there were possibilities. Now I was not free and the possibilities were closed off. Biology was destiny. Neglect - my own, and that of the medical profession - had taken away my choices. I was 27 and an old woman, all at once". When the hysterectomy failed to solve the physical problems, subsequent drug treatments left her with the side-effects of exhaustion and ballooning weight. 


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Carole Landis was an American actress who died in 1948 at the age of 29. She wanted to have children but was unable to conceive due to endometriosis. Her sister, Dorothy, also suffered from the condition. However, Carole's niece, Sharon Ross Powell, stated that Carole did not have endometriosis but instead a congenital malformation that was a residual effect of the influenza epidemic.


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Rosie Marcel is a British actress. She was diagnosed with endometriosis when she was 20 along with the blood disorder hemophilia. She also battled other diseases before being diagnosed with cervical cancer in 2008. Rosie's character in the BBC1 series, "Holby City", Jac, was diagnosed with endometriosis so she got to play out her real life feelings for the disease, on-screen. After suffering a miscarriage (which occurred just after she had finished filming the scenes in which her character gave birth) and months of trying to conceive, Rosie found out she was pregnant 2 days before she was due to start IVF treatment. Her daughter, Beau, was born in 2015.


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Toni Braxton is an American singer-songwriterrecord producer, actress and television personaility. There is little known about the singers battle with the disease though it is known she underwent surgery (in secret) for endometriosis in 2007. She has two sons: Denim Cole was born in 2001 and Diezel Ky was born in 2003.


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Tomoko Hagiwara is a former Japanese Olympic swimmer. She had always had severe menstrual pain, but in the past few years, had also felt a harsh pain in her hips and stomach. She had endured it, thinking the pain was caused by age. During training, however, she found it extremely difficult to move her body. Hagiwara went to four hospitals, and often cried from the uncertainty. At the last hospital she went to, she decided to have surgery which took place in April 2011. She was back in the pool swimming by May that year.


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Pamela Anderson is a Canadian model and actress. While filming Barb Wire, Pamela collapsed on set and was rushed to hospital. She had suffered a miscarriage, and had to undergo treatment for endometriosis. She has two sons, Brandon Thomas and Dylan Jagger.


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Lena Dunham is an American actress, writer, producer and director. During laparoscopic surgery, she was diagnosed with stage 2 endometriosis on her abdominal walls, bladder, liver and appendix. Her symptoms returned within 6 months of the surgery and she has started monthly Lupron injections since. She spoke out about having endometriosis in her 2014 book "Not That Kind of Girl" and also wrote an essay on the subject for Lenny Letter in November 2015 called "The Sickest Girl". She also regularly posts about the disease on her Instagram.


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Ashley Nicolette Frangipane, known by her stage name Halsey, is an American singer and songwriter. She opened up about her recent diagnosis of endometriosis on Twitter in January 2016, stating “ I was recently diagnosed after years of suffering and finding myself doubled over backstage in the middle of my sets, or fighting back tears on an airplane, or even being in so much pain I would vomit or faint. With doctors essentially telling me I was being a big baby about my period, or misdiagnosing PCOS, etc etc. Finding out that I have endo was the most bittersweet moment because it meant I wasn’t crazy! I wasn’t a ‘baby’! I had every right to be feeling like the world was caving in. But it was terrifying to find out".


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Jaime King is an American actress and model. She has polycystic ovary syndrome (PCOS) as well as endometriosis. She suffered from 5 miscarriages and went through 5 rounds of IVF during the 7 years of trying to conceive her first son, James, who was born in 2013. Her second son, Leo Thames was born in 2015. In an interview with the Daily Mail in 2015, she stated "Lena Dunham was a big factor in my speaking out. As a dear friend who spoke out in her book about endometriosis, she helped give me the courage to ponder what kind of impact I wanted to make on this world. And I thought, 'Hey, you have a big platform to help other women and couples'. I know it's not a sexy topic, I know that it's extremely private and vulnerable, but at the same time I went through years of silent suffering because no one speaks about these things or the symptoms and effects of endometriosis. Jaime added that she hopes her decision to speak out about her fertility struggles will help her fans to see past the perceived perfection of her 'Hollywood life'. I will sacrifice anything to help educate and bring awareness to something so common, yet so oddly taboo. Because it shouldn't be. It's not about infertility per se - it's about the disease of PCOS and endometriosis and the prevention and care of that".


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Jenny McCarthy is an American model, television host, comedian, actress, author, screen writer and anti-vaccine activist. Her son, Evan Joseph Asher, was born in 2002. There is little online regarding her having endometriosis other than a post on her Twitter in 2014 stating that she was in a lot of pain due to the disease.


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Michelle Dewberry is a British reality television contestant and businesswoman. She fell pregnant in 2006 but shortly afterwards suffered a miscarriage. The pregnancy came as a big surprise as doctors had told her it was unlikely she would ever have children due to her endometriosis.


Image courtesy of http://www.radianthealthmag.com/health-wellness/millen-magase-endometriosis/
Millen Magese is a Tanzanian model and the former Miss Tanzania. She has struggled with endometriosis since she was 13 and was diagnosed in 2004, at the age of 25Millen is adamant about the need to raise awareness for the disease, stating in a 2014 interview “I have one rule in life when it comes to health and making a change: when you can help someone, don’t allow shame and other people’s judgement to become an obstacle. It has been 10 years since my diagnosis, and it has taken a total of 12 surgeries, multiple attempts to reopen my blocked fallopian tubes, a non-functional ovary, miscarriages, and three IVF egg-retrieval procedures during one IVF cycle for me to speak out”. She created the Millen Magese Foundation which teamed up with the Endometriosis Africa Awareness Foundation and in 2015, Millen won a BET Global Good award for her humanitarian work with creating awareness and helping people who live with endometriosis.


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Stephanie March is an American actress. In 2014, after years of crippling pain, Stephanie went to hospital and begged the doctors to open her up. By the time they did, her appendix had ruptured. In her surgical records, it noted that they had found endometrial cells on her appendix but they didn't tell her this specifically and said she should see a specialist to confirm it but she found it difficult to get any doctors to believe she has the disease. In a 2014 article, Stephanie stated "People [in the U. S.] are just so uncomfortable with women's health. We're so afraid to talk about this as a health issue because we see it as a private, embarrassing problem". On the subject of infertility and how doctors take a sudden interest when this is a factor in an endometriosis case, Stephanie added "Until women's health gets the research, attention, education, and funding it deserves, we will not get better. Women's health cannot just be men's health plus a 'make-a-baby' add-on". 


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Tinopona Katsande is a Zimbabwean actor, radio and television personality. She was diagnosed with endometriosis when she was 17 and underwent 7 surgical operations on her uterus and ovaries before the condition was identified in America. Speaking in a 2014 article, Tinopona stated "Instead, being the Shona girl I am, the 'elders' and doctors attributed the excruciating, demobilising monthly period pains to jeko (dymenorrhoea) and I was told I would eventually grow out of it; especially after having a baby. Unfortuntely, however, I have not grown out of it and medically, I am infertile. I say medically because I believe Musiki Wangu (my creator) will give me the gift of a child if and when he wants - endometriosis or not". After trying every traditional medication known for dysmenorrhoea, she then tried Lupron but had to stop it because of her bones. She now manages the pain with high dosage painkillers.

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Trista Sutter is an American reality television personality. It took 2 years to conceive her son, Maxwell, born in 2007. Her daughter, Blakesley, was born in 2009. She announced on Twitter in 2013 that she has endometriosis.

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Daisy Ridley is an English actress. She opened up about her battle with endometriosis on her Instagram in 2016, saying "At 15, I was diagnosed with endometriosis. One laparoscopy, many consultations and 8 years down the line, pain was back (more mild this time!) and my skin was THE WORST!". She has also been diagnosed with polycystic ovaries.


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Kate Ford is an English actress. After Halsey opened up about her bttle with endometriosis, she shared the news on Twitter telling her fans "I suffer from this it's not easy". Her son, Otis James Roger Connerty, was born in 2008.


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Mel Greig is an Australian radio presenter and reality television contestant. She went through IVF treatment in 2015 and announced in 2016 that she had been dealing with endometriosis since she was 17. She said "It could have been major surgery but that would have potentially resulted in a hysterectomy, so they are doing minor surgery and draining my cysts". Explaining the cysts were on her right ovary, Mel said the minor surgery was her best option at the moment as she wasn't keen to get a hysterectomy. Her co-host enquired "So how desperate are you to avoid a hysterectomy at 34 years of age, because I would assume and correct me if I'm wrong, if you suffer from severe endometriosis like you do, hysterectomy would end it wouldn't it?". Mel responded "In terms of having children, yeah" before adding "hysterectomy doesn't end endometriosis".


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Zoe Marshall is an Australian radio presenter and blogger. She wrote an article in 2013 about the laparoscopic surgery she had recently undergone for the diagnosis and removal of endometriosis from behind her right ovary and on her left fallopian tube. Unfortunately, she received a lot of backlash from other sufferers, saying she was sugar-coating the topic and so she remained tight lipped on the subject until 2015 when she wrote about it on her blog. She is undergoing holistic treatment by seeing a kinesiologist and avoids sugar and wheat. 



Rumours...

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Sophie Rhys-Jones is the Countess of Wessex. She is rumoured to have endometriosis which caused her to suffer an ectopic pregnancy in 2001, though there is nothing online to confirm this. She has two children, Louise, born in 2003, and James, born in 2007.


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Sharon Stone is an American actress, film producer and former fashion model. She is rumoured to have endometriosis after having suffered repeated miscarriages though there is nothing online to confirm this. She has 3 adopted children; Roan Joseph, Laird Vonne and Quinn Kelly.


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Pam Dawber is an American actress. She is rumoured to have endometriosis though there is nothing online to confirm this. She has two sons, Sean, born in 1988, and Ty, born in 1992.


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Martie McGuire is an American songwriter, multi-instrumentalist and a founding member of the female country band, Dixie Chicks. She is rumoured to have endometriosis though there is nothing online to confirm this. She did, however, suffer from a collapsed fallopian tube and spent 3 years trying to conceive before trying IVF. Martie has three children: twins Eva and Kathleen born in 2004, and Harper, born in 2008 (all conceived through IVF).


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Celine Dion is a Canadian singer. She is rumoured to have endometriosis though there is nothing online to confirm this. However, in 2000, Celine underwent two small operations to improve her chances of conceiving, after deciding to use IVF treatment because of years of failed attempts to conceive. Her first son, Rene Charles, was born in 2001. After her 6th round of IVF treatment, Celine gave birth to fraternal twins, Eddy and Nelson in 2010.


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Neve Campbell is a Canadian actress. She is rumoured to have endometriosis though there is nothing online to confirm this. Her son, Caspian, was born in 2012.


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Nicole Kidman is an Australian actress, singer and film producer. She is rumoured to have endometriosis though there is nothing online to confirm this. She has two adopted children: Isabella, born in 1992, and Connor, born in 1995, from her first marriage. She also suffered an ectopic pregnancy during this time. She has two daughters from her second marriage. Nicole gave birth to Sunday in 2008 and Faith was born in 2010 through a surrogate.


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Khloe Kardashian is an American socialite, television personality, business woman, fashion designer, author, actress and presenter. She is rumoured to have endometriosis but there is nothing online to confirm this. She has struggled for several years to try to conceive and is reportedly trying IVF now.


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Queen Noor of Jordan is the American widow of King Hussein of Jordan and was queen consort between their marriage in 1978 and his death in 1999. She has 4 children: Prince Hamzah, born in 1980, Prince Hashim, born in 1981, Princess Iman, born in 1983 and Princess Raiyah, born in 1986. She is rumoured to have endometriosis though there is nothing online to confirm this.


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Lacey Schwimmer is an American competitive ballroom dancer and singer. She was starring in Dancing with the Stars in 2008, alongside Julianne Hough, when, because of Julianne's diagnosis, went for a check up. She was diagnosed with endometriosis but doctors decided at that point surgery was not necessary so therefore it hasn't been confirmed. Lacey is on medication to treat the disease.

Image courtesy of http://www.zimbio.com/photos/Nicole+Bobek/2011+Caesars+Tribute+II+Portraits/S0Q49qXPcy5

Nicole Bobek is a retired, American figure skater. The Endometriosis Research Centre said that they worked with Nicole's family during the time of her diagnostic process and at that time she didn't have endometriosis, however there are articles online that state she had to withdraw from competions due to it whereas other articles merely state this was due to 'internal infections' and ill health.

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Brenda Strong is an American actress, certified yoga instructor and spokesperson for the American Fertility Association. She is the creator of Strong Yoga4Women which runs yoga programmes for fertility, pregnancy and menopause. She has one child, Zakery Henri. She tried for 4 years to conceive a second child and then suffered a miscarriage. She is rumoured to have endometriosis though there is little online regarding this. In an article published in 2011, she mentions "I remember as a young girl my mother suffering with intense pain brought on by endometriosis, which eventually concluded in a hysterectomy". 


Image courtesy of http://www.thecubanhistory.com/2014/11/daisy-fuentes-actress-model-born-havana/
Daisy Fuentes is a Cuban born American television host and model. In 2001, Daisy featured in a televised public service announcement campaign to raise awareness of endometriosis. Talking about the campaign, she stated "Promoting women's health issues is a top priority for me. Endometriosis is a painful and disruptive disease yet it's relatively unknown. I hope to help women and girls take control of their own health and fight this disease with knowledge". It is unclear if Daisy actually has endometriosis herself.


Do you know anyone else that should be on this list?... Let me know if you do!

S.
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