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Adenomyosis Advice On-line Support Page

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Posted on August 22, 2011 at 5:16 PM
Welcome to the Adenomyosis Advice On-line Support page. 
Please feel free to ask any questions.
Kind regards, Danielle x

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150 Comments

Reply Becky
8:19 PM on August 24, 2011 
Really interesting site and a condition that I have never heard of before.
My mother had a hysterectomy when she was 36 due to 'menstrual issues'?? Is adenomyosis known to be hereditary?
I have two daughters who both had pseudo periods when they were a few days old due to my high hormone levels. I have found that many people don't know about this but it is fairly common in newborn girls, makes me wonder if there is a link?
Reply Danielle
10:09 PM on August 24, 2011 
Becky says...
Really interesting site and a condition that I have never heard of before.
My mother had a hysterectomy when she was 36 due to 'menstrual issues'?? Is adenomyosis known to be hereditary?
I have two daughters who both had pseudo periods when they were a few days old due to my high hormone levels. I have found that many people don't know about this but it is fairly common in newborn girls, makes me wonder if there is a link?

Hello Becky, thank you for your feedback, and thank you for your questions. Your question regarding the hereditary link is an interesting one. Personally, I was not told that Adenomyosis was hereditary. I am 38, and my symptoms appeared when I was 36. Going back through my family's maternal side five generations, I have discovered various similar hormonal 'issues' starting at around the same age throughout the five generarations, which ended in either hysterectomy or at worse inoperable womb cancer later on in life. I think the medical world ARE finally waking up to the fact that we are more likely to inherit various conditions by our 'inherited DNA fingerprint'. Adenomyosis appears to be triggered by an overload of estrogen that has no-where to go, since it gets trapped in the muscle tissue and does it's damage. Critically, in most women, it is the peri-menopause where the incidence of estrogen increases, and it is only when the menopause begins, or pregnancy occurs, does the condition susbide naturally. On pseudo periods, these are more common than people think, and yes I agree, the high levels of hormones from 'mum' cause this to occur, and there could well be a link/or an undiagnosed hormone imbalance prior to the pregnancy in mum or maybe it is simply that it is a natural by-product as part of our normal development as per this week's BBC2's Horizon: (36 mins 9 seconds) http://www.bbc.co.uk/i/b013ywz4/ . Maybe someone out there can advise on that subject further? ~ Danielle x
Reply Donna
10:23 PM on August 25, 2011 
Hmmm your story very much mirrors my own. Since dx I have spoken to a couple of women who more than probably are suffering too. It took 2 years for me to get a Dr who KNEW what I had. It was a happy day, I was starting to think it was all in my head!!

Then it took 6 months of arguing for a hysterectomy. No I didn't want implants, pill or patches. I just wanted it OUT.

Great job you are doing here Danielle. Will bookmark for sure.

Donna x
Reply Danielle
11:20 PM on August 25, 2011 
Donna says...
Hmmm your story very much mirrors my own. Since dx I have spoken to a couple of women who more than probably are suffering too. It took 2 years for me to get a Dr who KNEW what I had. It was a happy day, I was starting to think it was all in my head!!

Then it took 6 months of arguing for a hysterectomy. No I didn't want implants, pill or patches. I just wanted it OUT.

Great job you are doing here Danielle. Will bookmark for sure.

Donna x

Hey Donna x I am so sorry to hear that you have been through the same nightmare. It's this that I was in fact most dreading to hear, that other women out there would be suffering and fighting all the way too. I have to say the only drug I was offered was an injectable hormone blocker for three months to 'bring on' an early menopause, and that was only really offered so that they could see whether the hormone would 'positively' improve the symptoms so that they could see WHETHER it really was Adenomyosis (!) and that was AFTER the lovely nurse had actually spotted the condition. Not really much of a help. I was like you, not interested in the 'sticking plaster' approach, since there is a family history of DVT, and in any case the excess weight was now weighing my spine down. Immediately after the op I was 8lbs lighter - and since then - I am zooming back to my previous dress size that I was for 20 years :)))) Thanks for the feedback by the way x Spread the word, let's get people talking! ;o)Danielle x
Reply Christina
11:58 PM on August 25, 2011 
Hi Danielle,
I'm 26 & was just diagnosed with Adenomyosis last week when my gyno did my 3rd laparoscopy in the last year for my aggressive endometriosis. It wasn't there when he did the last one 6mths ago & now my uterus has enlarged by the size of a pear. I look 4months pregnant & have constant daily attacks if what I describe as labour pain. A small amount of endo was removed however The laparoscopy failed to relieve any of my pain as the Adenomyosis is deep in the uterine muscular walls. He said I need to have a hysterectomy but knows I want to finish my family first. The only thing that he said could help is a mirena which ive tried before & had to get removed because of the excruciating pain it caused me & I refuse to go there again. Enter real dilemma. I have a 2yr old & hubby walked out over a yr ago. I would be absolutely devastated if I could not have anymore children but without a partner in my life it seems my only option is to use a donor. I cannot function with this constant pain & i worry that the worse it gets & the longer I leave it, the more trouble I will have trying to concieve & complications during pregnancy. I have tried to find information about Adenomyosis & pregnancy but there doesn't seem to be much research out there. I was wondering if you knew of where i could find some reliable information on this. Also, I have seen some sites selling natural progesterone creams-progesterelle (yams & coconut oil). Is there any research that these kind of things might help with the pain or just a scam? (i am already on Naproxsyn 1000 SR daily). I have some big decisions to make & I am completely overwhelmed & everytime the pain comes it's a constant reminder & pressure to make a decision. I can't live with this pain but I can't give up on children. Please help.
Reply Suzanne
6:10 PM on August 26, 2011 
Danielle, thank you for creating this site. Hearing that you lost weight immediately after surgery, and continue to loose is quite encouraging. I should be hearing from my OBGYN's office today as to when I can schedule surgery. I plan on a partial,having it done via lap, and keeping the one ovary I have left. I'm nervous, which is why I've been putting it off, but it needs to happen. I'm so done dealing with this.
Reply Danielle
7:56 PM on August 26, 2011 
Christina says...
Hi Danielle,
I'm 26 & was just diagnosed with Adenomyosis last week when my gyno did my 3rd laparoscopy in the last year for my aggressive endometriosis. It wasn't there when he did the last one 6mths ago & now my uterus has enlarged by the size of a pear. I look 4months pregnant & have constant daily attacks if what I describe as labour pain. A small amount of endo was removed however The laparoscopy failed to relieve any of my pain as the Adenomyosis is deep in the uterine muscular walls. He said I need to have a hysterectomy but knows I want to finish my family first. The only thing that he said could help is a mirena which ive tried before & had to get removed because of the excruciating pain it caused me & I refuse to go there again. Enter real dilemma. I have a 2yr old & hubby walked out over a yr ago. I would be absolutely devastated if I could not have anymore children but without a partner in my life it seems my only option is to use a donor. I cannot function with this constant pain & i worry that the worse it gets & the longer I leave it, the more trouble I will have trying to concieve & complications during pregnancy. I have tried to find information about Adenomyosis & pregnancy but there doesn't seem to be much research out there. I was wondering if you knew of where i could find some reliable information on this. Also, I have seen some sites selling natural progesterone creams-progesterelle (yams & coconut oil). Is there any research that these kind of things might help with the pain or just a scam? (i am already on Naproxsyn 1000 SR daily). I have some big decisions to make & I am completely overwhelmed & everytime the pain comes it's a constant reminder & pressure to make a decision. I can't live with this pain but I can't give up on children. Please help.

Hello Christina. Firstly, I am very sorry that you have been diagnosed with this condition so early on. (I too had one child, separated and circumstances pre and post my diagnosis, meant for me it was too late for any more children). I truly understand the pain you are facing and the sadness it can bring.

Being positive, time IS on your side. Becoming pregnant produces a good supply of hormones which CAN temporarily halt the progression of the condition. If you do decide upon having another baby, remember not every case of adenomyosis is the same or as severe! I have put three new links under the 'Useful Links' heading on Adenomyosis in Pregnancy, which I hope may be of interest to you.

As for remedies and research, coconut is very high in fat. Estrogen gets trapped in fat cells and fat cells produce estrogen! http://en.wikipedia.org/wiki/Estrogen

Yams: my instinct would be to eat them as part of a regular healthy diet rather than using creams that have not been tested a under controlled environment, since it seems the yam creams may not actually work either: http://www.drweil.com/drw/u/QAA263507/wild-yams.html

Synthetic progesterone creams do seem to work, however again the strengths and way they absorb is not an exact science. People come in different shapes and sizes, (body mass ratios etc), as do hormone levels, which as we all know with this condition, fluctuate from one person to the next.

I too was tempted by these creams, but realised that my estrogen levels were far too high to control with just a cream. After much research, I have modified my diet, to counter-balance the tumour's production of estrogen. I have included more brassicas (cabbage, broccoli, cauliflower) which naturally help the body extract the hormone, have taken more calcium suppliments, and cut out the estrogen pumped milk that as a family we enjoyed every day, to lessen the effects of the bovine hormones. I have also decided to wait post surgery to see after tests whether it is really necessary in my particular case to use anything chemical to balance the natural estrogen.

It would be great to hear from anyone else who has had success in controlling their symptoms NATURALLY.

I hope you find something useful in the above. Please take care, and keep in touch. Danielle x
Reply Danielle
9:25 PM on August 26, 2011 
Suzanne says...
Danielle, thank you for creating this site. Hearing that you lost weight immediately after surgery, and continue to loose is quite encouraging. I should be hearing from my OBGYN's office today as to when I can schedule surgery. I plan on a partial,having it done via lap, and keeping the one ovary I have left. I'm nervous, which is why I've been putting it off, but it needs to happen. I'm so done dealing with this.

Hi Suzanne :) - Planning for surgery is excellent news and it is natural for it to be a very nervous time, but good to hear you are well on track regarding your treatment. Being in control of this condition is important, and part of the battle. Keep us posted. Take care x Danielle x
Reply Caroline
1:18 PM on September 4, 2011 
Hi, your website is an amazing resource and I only wish there were more of them. I was recently diagnosed after suspected endometriosis, this was an easy diagnosis im glad to report. I've been looking into research trying to figure out why I have this condition as I have no children and have never been pregnant. However I was sexually abused as a child and I have read some stuff that suspects this or rape as being a possible cause. Research I have seen so far has been inconclusive or it does not focus too much attention in this area. I was wondering if maybe you have come across any research that might shed some light on this fir me. Thank you
Reply Danielle
4:52 PM on September 5, 2011 
Caroline says...
Hi, your website is an amazing resource and I only wish there were more of them. I was recently diagnosed after suspected endometriosis, this was an easy diagnosis im glad to report. I've been looking into research trying to figure out why I have this condition as I have no children and have never been pregnant. However I was sexually abused as a child and I have read some stuff that suspects this or rape as being a possible cause. Research I have seen so far has been inconclusive or it does not focus too much attention in this area. I was wondering if maybe you have come across any research that might shed some light on this fir me. Thank you

Hello Caroline, and thank you for your feedback. Glad you received an easy diagnosis,that IS reassuring to read. Regarding the condition generally, the word 'trauma' is always used in relation to it. I have located some information in relation to gynae related trauma (please see the link below) which may be of interest to you. In the meantime, keep in touch and I hope you receive the necessary treatment you need to make life comfortable and pain free soon x Danielle x

http://urogyn.org/documents/Pelvic%20Pain%20Review%20PaulsonGorCP
P.pdf
Reply Danielle
1:03 PM on September 8, 2011 
Christina says...
Hi Danielle,
I'm 26 & was just diagnosed with Adenomyosis last week when my gyno did my 3rd laparoscopy in the last year for my aggressive endometriosis. It wasn't there when he did the last one 6mths ago & now my uterus has enlarged by the size of a pear. I look 4months pregnant & have constant daily attacks if what I describe as labour pain. A small amount of endo was removed however The laparoscopy failed to relieve any of my pain as the Adenomyosis is deep in the uterine muscular walls. He said I need to have a hysterectomy but knows I want to finish my family first. The only thing that he said could help is a mirena which ive tried before & had to get removed because of the excruciating pain it caused me & I refuse to go there again. Enter real dilemma. I have a 2yr old & hubby walked out over a yr ago. I would be absolutely devastated if I could not have anymore children but without a partner in my life it seems my only option is to use a donor. I cannot function with this constant pain & i worry that the worse it gets & the longer I leave it, the more trouble I will have trying to concieve & complications during pregnancy. I have tried to find information about Adenomyosis & pregnancy but there doesn't seem to be much research out there. I was wondering if you knew of where i could find some reliable information on this. Also, I have seen some sites selling natural progesterone creams-progesterelle (yams & coconut oil). Is there any research that these kind of things might help with the pain or just a scam? (i am already on Naproxsyn 1000 SR daily). I have some big decisions to make & I am completely overwhelmed & everytime the pain comes it's a constant reminder & pressure to make a decision. I can't live with this pain but I can't give up on children. Please help.

Hi Chistina, just wanted to point you to some research information that has just been made available to me regarding pregnancy. I have included the link here but it is also available on the latest research page http://www.infertile.com/inthenew/sci/2010-09-RBMO-adenomyosis.ht
m

Hope this gives you a little more hope x Danielle x
Reply Woman Warrior
2:27 AM on September 13, 2011 
I was just diagnosed with this last week during an ultrasound. I also have endometriosis and after this diagnosis I also found out that my mom had both endometriosis and adenomyosis. My RE didn't say specifically if it's hereditary or not but when he found my mother had it too, he was much more confident that I also have it. We are about to start fertility treatment in a few months and I am so nervous about this added factor though it makes so much sense why my periods and pain have been the way they've been!

Thank you so much for this site. There is SO little information out there and I hope to learn more from here and from others so we can increase the knowledge that's out there!
Reply Danielle
9:36 PM on September 14, 2011 
Woman Warrior says...
I was just diagnosed with this last week during an ultrasound. I also have endometriosis and after this diagnosis I also found out that my mom had both endometriosis and adenomyosis. My RE didn't say specifically if it's hereditary or not but when he found my mother had it too, he was much more confident that I also have it. We are about to start fertility treatment in a few months and I am so nervous about this added factor though it makes so much sense why my periods and pain have been the way they've been!

Thank you so much for this site. There is SO little information out there and I hope to learn more from here and from others so we can increase the knowledge that's out there!

Hello Woman Warrior on Wednesday, September 14, 2011 10:35 PM

I am glad that you have found the website, and am sorry to hear that you have both conditions. There seems to be a lot of information out there now indicating a strong DNA/family link. I am very much wanting to push the boundaries on getting more of the medical profession talking about adenomyosis and can confirm a healthy number of NHS and other international medical authorities have added themselves to the Twitter site. Thank you for your feedback and all the best with the fertility treatment. Keep in touch x Danielle x
Reply Tove from Norway
7:42 PM on October 10, 2011 
Hey, and thanks for your interresting site! Im 40 years old, and mother to 2. I was diagnosed endo via lap last year, but rejected to start hormonal treatment (I also have "Factor V Leiden"). Now my pain is stronger again, and Im waiting for another visit at the hospital. After reading your history, I will ask my doc about adenomyosis as well. Even before I found you site, I wounder about having a hysterectomy, but I am affraid of the side effects - early menopause, lack of desire ect. What are you experiences?
Reply Danielle
5:34 PM on October 11, 2011 
Tove from Norway says...
Hey, and thanks for your interresting site! Im 40 years old, and mother to 2. I was diagnosed endo via lap last year, but rejected to start hormonal treatment (I also have "Factor V Leiden"). Now my pain is stronger again, and Im waiting for another visit at the hospital. After reading your history, I will ask my doc about adenomyosis as well. Even before I found you site, I wounder about having a hysterectomy, but I am affraid of the side effects - early menopause, lack of desire ect. What are you experiences?

Hey Tove, thank you for your post. As you are aware there are a number of different types of hysterectomy, and each is done for different reasons. In my experience, I have suffered no side effects since I still have my ovaries, so will still go on to have all the correct hormones until my body clock decides. I did not suffer any 'shock' to the hormones post surgery, which I was expecting, I have since had two 'invisible' monthly cyles, with a little PMS as I used to have, which is reassuring! The scar has healed beautifully and in truth it cannot be seen at all, it is so neat. It has been such a relief to have absolutely no pain, a great night's sleep and go back to my original body shape, and feel like myself again. As far as lack of desire etc, don't read the horror stories! I have not noticed any negative changes in that department. I do not have ANY regrets whatsoever, and can only advise any woman experiencing such tremendous constant pain, once they have finished having children, to go on and have a hysterectomy. It would be a good idea to get checked for adenomyosis in any case, since if you do have it, it can grumble on whilst all the hormones are there well into the menopause,and make other things like your endometrosis and FVL far worse. Best of luck at your next appointment. Keep in touch. Danielle x
Reply Hejaw
1:37 AM on November 9, 2011 
Danielle, Thank you so much for putting so much into your site and gathering this info for us women. I am 40 w/3 children. I was diagnosed with Adenomyosis a few weeks ago (post endometrial ablation 2 yrs ago for extremely heavy periods). I also had a blood clot that my GYN thought was causing the pain and discomfort so she did a D & C, I think out of hope that it was causing the pain. 2 days later I was in more pain than prior to procedure...so I am now scheduled for Hysterectomy 8 DEC...I am in daily pain and cannot do a full day at work...which is frustrating to someone who never takes a sick day. Luckily I work with some great men who are very sympathetic. Do you have any suggestions for coping with the pain until I get to the surgery day. I cannot take narcotics they make me feel too loopy and none have helped the pain either. 800mg Motrin help some but not completely. thank you for making feel like I am not the only one going through this and I am not crazy. I was lucky to have good drs who sent me right for an ultrasound and MRI after my description of problems. Thanks for all your research Heidi
Reply Danielle
6:32 PM on November 10, 2011 
Hejaw says...
Danielle, Thank you so much for putting so much into your site and gathering this info for us women. I am 40 w/3 children. I was diagnosed with Adenomyosis a few weeks ago (post endometrial ablation 2 yrs ago for extremely heavy periods). I also had a blood clot that my GYN thought was causing the pain and discomfort so she did a D & C, I think out of hope that it was causing the pain. 2 days later I was in more pain than prior to procedure...so I am now scheduled for Hysterectomy 8 DEC...I am in daily pain and cannot do a full day at work...which is frustrating to someone who never takes a sick day. Luckily I work with some great men who are very sympathetic. Do you have any suggestions for coping with the pain until I get to the surgery day. I cannot take narcotics they make me feel too loopy and none have helped the pain either. 800mg Motrin help some but not completely. thank you for making feel like I am not the only one going through this and I am not crazy. I was lucky to have good drs who sent me right for an ultrasound and MRI after my description of problems. Thanks for all your research Heidi

Hello Heidi,

Well done for finding the site and thank you for your feedback. Unfortunately I can completely understand your frustrations regarding work only too well! I am glad you are on target for surgery for the 8th December and am happy to give you a few tips that I found useful. Being sensitive to quite a few pain killers myself, I found the only safe and easy medication for me at the time was good old paracetamol, although even then, I was not able to take this every day since that too would upset my tummy. What I found helped the most was wearing clothes that did not restrict during the course of the day. I set about getting (and I know it sounds expensive but I got all my stuff from ebay!) maternity jeans/trousers in three sizes. I would start off at a size 12 in the morning, and go up to a size 14 or even 16 by the end of the day (just before my hysterectomy) since the womb was so heavy and swollen and pushed against my bladder and bowel (and that was on top of the estrogen fueled water retention!). I would reccomend doing regular walking for exercise, if you can manage at least half an hour a day, as it will help you deal with the surgery far better and you will benefit in terms of good circulation which will help you feel a little better. Also take a really good multi-vitamin with the standard guideline reccommendation of iron - 14mg, which, if you are not needing iron tablets for anemia, will help keep your iron stores generally happy and again will help you feel less tired. I found hot baths would aggravate the blood circulation in my tummy and would make me feel even more tired/faint which was not ideal! Get as much sleep as you can. I was constantly napping all day and was asleep for the night by 8pm and slept through till the morning, but apparently I would be in pain all night and moaning and crying in pain in my sleep(much to my poor husband's distress). For extra support at night, I did find a 'V' shaped pillow good to pop behind the lower spine to support prior to and post surgery. I bought mine on Amazon for under £10. Massage did help, particularly at night, (clockwise motion on tummy with a nice relaxing oil (lavender) in a carrier oil (almond oil)). When the pain was particularly excruciating, I relied on the labour breathing techniques that I used many years before when I gave birth to my daughter, since I would experience sharp hard contractions, sometimes with little warning. To minimise the constant pain and spasms in and around the cervix, I only used pads as opposed to tampons etc for comfort. Other than that, I did try and up my fruit and veg content to make sure that I was not adding to the constant pain with constipation! Basically if you revert back to a mindset of being pregnant and post surgery (as in post pregnancy), dont push it until you are three months post, and then take things gradually, and you should find you will be pretty much back to the old you and more importantly PAIN FREE! ;o) I hope that helps a little at least, and I wish you all the very best with the surgery x Keep in touch, take care x Danielle x
Reply Michelle
11:16 PM on November 29, 2011 
Hello, I'm Michelle and i'm 24 years old. I was diagnosed with Adenomyosis in 2009. I have 2 beautiful daughters. I have been asking for a hysterectomy since coming to terms with it would be the only way to have a somewhat "normal" life. I want to be a normal energetic young mommy. But can't with the constant pain and being exhausted. I've seen 2 ObGyn's, i wanted a second opinion. My Doc wants me to try every possible solution before he gives me a hysterectomy. So i had Mirena inserted sept 13 2011. He is giving me 5 more months to see if i have any difference and for me to get the full effect of the mirena. So waiting is not fun, when you want a life back!!I have noticed a new symptom, i dont think it has anything to do with adeno but i think it's endo. It just never stops!! Maybe one day Adeno will be taken seriously!! :) Thank you
Reply Danielle
11:31 AM on November 30, 2011 
Michelle says...
Hello, I'm Michelle and i'm 24 years old. I was diagnosed with Adenomyosis in 2009. I have 2 beautiful daughters. I have been asking for a hysterectomy since coming to terms with it would be the only way to have a somewhat "normal" life. I want to be a normal energetic young mommy. But can't with the constant pain and being exhausted. I've seen 2 ObGyn's, i wanted a second opinion. My Doc wants me to try every possible solution before he gives me a hysterectomy. So i had Mirena inserted sept 13 2011. He is giving me 5 more months to see if i have any difference and for me to get the full effect of the mirena. So waiting is not fun, when you want a life back!!I have noticed a new symptom, i dont think it has anything to do with adeno but i think it's endo. It just never stops!! Maybe one day Adeno will be taken seriously!! :) Thank you

Hi Michelle, thank you for your message. I am sorry to hear that you have been in pain and suffering for so long. I appreciate the stress that being given medication such as the Mirena adds to the already miserable situation you find yourself in. With this condition, it seems to be the general consensus that only if you have finished child bearing that then the clinicians will support your decision to have a hysterectomy. I agree, one day the clinicians may actually realise that if you are prepared to have such a final proceedure (all things considered) that the patient MUST be in considerable pain and/or discomfort even to consider such a life changing type of surgery. As I understand it, hormone treatments are often administered in order to indicate a relief of the symptoms - more as an indicator to the ObGyn's that the new level of hormone (usually progesterone)introduced has shown that there is an imbalance of estrogen that in fact that is driving the disease. If you have had a scan showing the blood flow fluctuations within the uterus (in colour), this will indicate to you at least, that the condition is definitely there. Please take a look at this image for reference of what to look for on the screen (if you have not yet had an ultrasound like this) http://www.ultrasound-images.com/images/Adenomyosis-1b.jpg. You cannot be on hormone replacement indefinitely either since this is VERY dangerous to your health, and no health professional or well qualified ObGyn would ever knowingly put you at risk in this regard. February is not far away in terms of your Mirena, but also watch out for any discomfort that this may give a potentially already swollen and upset uterus. In my case, I collapsed with the pain of the coil after it had been in for about a year, and following that I had my TAH. Take care and keep in touch x Danielle x
Reply dom
5:11 PM on December 4, 2011 
thank you for the site , ive recently been diagnosed after approx 10 years of being in pain.I pretty much have all the symptoms have seen countless doctors and had countless tests but now ive been diagnosed it makes me feel like a) im not going mad and b) something will be done. As its a degenerative disease im pretty much living my life as a reclusive 90 year old (im actually 34!) but this will hopefully change in febuary when i have a endometrial ablation. Ive found a fantastic surgeon/gynae doc who wants to try this before the hysterectomy and the best thing about him is . . he actually listens to what im telling him.Ive tried to find out about this condition and this website has been a godsend xx
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