Does anyone here have adenomyosis? I had an internal scan recently and the consultant thinks he might have seen it. Am getting a hysteroscopy and laparoscopy on 14th March to check it and to rule out any cysts, fibroids , endo, endometrial hyperplasia, hydrosalpinx and other things. Basically he's trying to find out what's wrong as i've had 4 early miscarriages (1 through IVF) and 2 ectopics in the last 4 years, so he thinks something could be wrong internally (my miscarriage bloods came back fine, I've got goods quality embryos and lining is fine naturally).
I know I shouldn't google before I know I have it or not but it's making me a little nervous. Obviously it would explain the miscarriages if it was true but as far as i'm aware there's not loads to do to fix it or help you get pregnant is there? It's such a high miscarriage rate, but I know people do get pregnant with it so it's not impossible but just a lot harder. I'm just a bit tired as we've already been through so many losses and upset, just the thought of more is a bit depressing.
If anyone has it or has any experience then please do let me know! Thanks
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I have "suspected adenomyosis", as oftentimes it's impossible to 100% diagnose until a full hysterectomy (as adenomyosis is within the uterine wall). Did he say whether he thinks it's focal or diffuse? A focal area would be a large mass, looking more like a fibroid. Whereas diffuse is spread throughout the uterus and sometimes the only way to guess this is through symptoms, or if you have a "bulky / enlarged uterus".
I've also heard horrible things about the miscarriage / success rates with adeno, but I'm now approaching 13 weeks pregnancy after my laproscopy, and everything is going well 🤞🏻 I'm under a reproductive immunologist, and their treatments do help control the inflammation / immune side of endometriosis and adenomyosis, whether it can be removed or not. Down-regulating with prostrap and letrozole for 3 months prior to immediate FET, is also an option too that lots of ladies have success with.
It's great you are getting in for a hysteroscopy and Laparoscopy though! Does your surgeon do excision if they find endo? I believe this is the gold standard. I had mine excised and got pregnant 8 weeks later. I do believe it helped a lot. And the medications from my RI helped control the adeno / immune flares that I always get when estrogen starts to rise. Don't lose hope, all the best to you xx
Oh that's really interesting that you so much! Congrats on the pregnancy, that's fantastic news This gives me so much hope!
So he didn't say it if was focal or diffuse at my scan, in my notes he sent my GP he said 'there was a circumscribed 25 x 19 mm adenomyoma that was abutting the endometrial lining' which makes me think it could be focal but I guess once he goes in there in March he might be able to confirm. I definitely don't have too many symptoms, only random pains throughout my cycle and quite bad bloating, no super heavy/painful periods or anything.
That's so great that the laproscopy helped you though. Did you seek out the reproductive immunologist or did your clinic suggest it? If you don't mind me asking what were you put on for your FET following your lap surgery? I did always wonder if inflammation or immune issues were our problem. That's useful to know re: prostrap and letrozole, maybe my consultant will suggest that post surgery.
Yeah he said he would try to get rid of any endo if he finds it (which I think he will) so that's good! Really hoping that helps us as i'm coming to the end of my teather with it xx
Wishing you loads of luck with the surgery! Hopefully it's a real game changer for you - and you can get some answers!
My RI put me on prednisone (high dose), tacrolimus, hydroxychloroquine, IVIG, blood thinners, baby aspirin, high dose progesterone, estradiol patches. We covered every base really, as there are so many things that can be going wrong. I had looked into it for quite some time. I also found a new doctor / clinic that was RI friendly, who seemed to actually want me to have succes. I was a bit hesitant, but so glad I went with it all now. Xx
Thanks Chel90😘 wow that's a lot of stuff, still if it worked who cares ey! I'll definitely ask my consultant about RI as he seems really on it with the hysteroscopy and laparoscopy, and seems to want to find out what the F is going on so hopefully he'll help or recommend someone within that too (unless he suggest down regs which I deffo will try too) xx
hi Chel91, I also have mild to moderate adenmyosis. No symptoms and no endo. Everything clear in my hysteroscopy. Would you mind sharing your protocol that led to a successful fet? Did you down reg? And if so, for how long? And what treatment did your reproductive immunologist suggest for adeno? I’m trying to work out what the next best step is for the next transfer. Thank you for sharing.
Hi Bed12, have you ever had a laparoscopy surgery? It's the only way to 100% diagnose or rule out endometriosis. My endometriosis was not visible on ultrasound or on MRI, but I had extensive endo found in surgery on my bladder, ligaments, vaginal and rectal areas, and more.
I didn't do downreg this time, as I just had the fresh laprascopy, and was being impatient (but it was my next step). See my comment above for my list of RI treatments. They aren't directly for adeno, but my RI does feel that adeno creates inflammation / cytokine release, and also triggers or is related to underlying autoimmune issues, and these are then controlled with the medications. If that makes sense! Feel free to send me another PM if you want more info - that's totally fine with me! 😊 xx
hi Chel91, first congratulations on the great news of pregnancy and I hope the journey is smoother now. I saw you have an reproductive immunologist as well, would you mind sharing their name please? Is it private or via NHS. Also how does it work really to schedule a consultation with them?
I have the same problem with adenomyosis and endo like you do would like to check few things before my next try. Also, what were the side effects from tacrolimus and hydroxychloroquine and how long did you take them before/during FET?
Thank you so much, I have saved your post for future reference 😘 …xoxo
Hello, I have adenomyosis but not sure how helpful I can be. I’ve had two miscarriages in the last year but my consultant says it it more than likely due to chromosomal abnormalities in the embryos, linked to my age. Moving forward, we will test embryos. The adenomyosis causes horrifically painful periods that are difficult to manage but I don’t worry too much about it and IVF as I’ve been led to believe that it shouldn’t be too much of a worrying factor. Wishing you all the best xx
Hey, thanks for replying! So sorry to hear about your miscarriages, it's so tough isn't it
I've seen this a few times online about it not effecting fertility too much, I don't really get how it doesn't as I thought having it makes it harder for any embryo to implant?
Deffo a good idea to test the embryos though, that was next on my list of thing to do if this investigation doesn't present anything. Good luck with the testing!! xx
Hi there, Ive just been diagnosed with Adeno about a month ago via MRI (this is the only way aside from a hysterectomy to diagnose it) Can you push for an MRI? I have a no endometriosis and no symptoms of Adeno. Never had a painful or heavy period in my life. We've done 15 embryo transfers with no success and recently had a miscarriage at 9 weeks which my specialist believes is due to the Adeno as it was a chromosomally normal embryo. It's a difficult pill to swallow. Mine is diffuse so all through my endometrium. The treatment that has been advised for us is zoladex for 6 months and I've decided not to go ahead with that, so we are moving onto surrogacy. Sorry you are going through this, it's such a shitty hand to be dealt. All the best x
Sorry to hear that Kimbob82 Not sure I need to push for an MRI yet as my consultant thinks we'll be able to diangose the problem (whether that's endo, ando or something else) through the hysteroscopy and laparoscopy so we'll see what happens there.
I hope you don't mind me asking but why did you say no to the zoladex? How comes you weren't able to do down reg with prostrap and letrozol?
Good luck with the surrogacy, it's something i've been thinking of but not sure we have the money tbh as it sounds soooo expensive! x
FYI they aren't always able to pick up adenomyosis during a lap. They may suspect it if you have an enlarged or bulky uterus but the gold standard for diagnosing adeno is via MRI. I did some research on zoladex and I'm not prepared to put my body through hell (menopause) for something that isn't a guarantee. Also there has been cases where women have been on zoladex and their body has not come out of menopause after stopping treatment. We are in Australia so our surrogacy arrangement is completely altruistic with a close friend of mine. I've been through so much. I just want a baby now, I just have to accept that I'm not able to carry... which I've done. Good luck with your treatment x
I just wanted to say I have experienced 6 months of zoladex (chemical menopause) and it was the absolute worst experience of my life. I was diagnosed with Adeno (mine is global and quite aggressive, my period are terrible and constantly suffer with lower back and leg pain due to bulky uterus, it's about 3 x normal size) a couple of years ago after suffering natural and IVF miscarriages, multiple chemicals and implantation failures. I would do absolutely anything to have my rainbow baby but have to say this took me to the brink and wouldn't wish it on anybody so completely understand why you have chosen not to, I have also decided that moving forward I will not do it again, I am not sure whether surrogacy is as easy for us to embark on, however I am definitely working on immunology and reducing inflammation treatment. I wish you well in your journey ❤️
Wow that is crazy. I'm so sorry you had to go through that Do you mind if I privately message you? So even after your six months on zoladex you didn't have success? This is precisely what I was concerned about. I have been under the care of a reproductive immunologist for the past 7 or 8 transfers and although he was able to get me pregnant, I never made it past 9 weeks unfortunately. I too am trying so hard to reduce inflammation but it's not easy. I completely cut gluten out of my diet 12 months ago and lowered my sugar and dairy intake but obviously that's made no difference to my adeno, as my MRI was done only 4 weeks ago. Although I have no symptoms so I wouldn't really know if it's better or worse than before... 😏 Anyway thank you for helping me realise that I have made the right decision, sometimes it's hard and you doubt yourself. But my intuition was telling me that zoladex was not for me. Maybe it works for some, but I'm just not willing to take the risk. X
Oh and ps what are your thoughts on serrapeptase? I've read that can help... I'm prepared to try anything natural if you have any input in that department... ?
Sure you can message me privately. I don't often respond to posts or update my own story because tbh it is a complete s**t show and I'm quite shy but I do realize in some cases it actually can help others with their own journeys so I will update my story today.
I absolutely do think you should try systemic enzymes such as serrapeptase. I have been taking it on and off for a few years and I can definitely say it has helped with the effects of adeno and when I take it religiously which I have been doing for nearly a year now this time around I have fallen pregnant naturally outside of IVF but have miscarried between 8 - 11 weeks. I do also have low AMH and DOR and now being 41 it could be that my egg quality is just not up to scratch anymore but I do always have hope knowing I can fall pregnant on my own.
I started seeing a naturopath last year and have also drastically changed my diet I have also started hertz sound therapy which has reduced the drastic symptoms I experience around my periods but may story has developed in other ways which has made me have to seriously think about whether I can pursue IVF anymore.
I often also question my decisions, my instincts and whether I am making the right decision, I feel we do that simply because ultimately, we want to win at the end and have our babies, but I encourage you to trust your gut esp when you have invested so much time and energy into this, all the hours of research etc
Don't worry my story is also what feels like a never ending shit show too... hence why I'm throwing in the towel and moving onto surrogacy. I am 40 so a similar age to you but have not been lucky enough to fall pregnant naturally, only through IVF. I'm sorry for your recent loss I will message you (probably tomorrow as I'm in Australia and it's my bedtime here) Xo
I took Danol for several years a steriod which certainly effected me with weight gain and my Pancreas. I came off it to do IVF. After the IVF failed I tried to go back on it, then I couldn't digest food, reflux, chest pain, my heart enzymes changed so now I take a low dose of Candersaine. I tried another blood pressure tablet, just one tablet a extreme headache and I couldn't stand up, feeling very ill. Within 3 mths of no Danol I started on Zoladex, it was hard to take with symptoms the Endo finally improved to just bearable discomfort,a few days per mth there was pain but not on the same level, no period etc. I enjoyed sex more. After being on this drug 10yrs+ I started new symptoms. Inflammation in the brain, brain fog, werid feeling, angry, depression. Travelling on planes I became pretty unwell. When I came off Zoladex which took 2 yrs to feel normal without any odd feelings. I still have Endo, it's slow, it's left me with disfuctional bowel, pain but most of the time normal painkillers can deal with it. The damage this serious form of Endo has caused far reaching damage. My marriage went. He couldn't take it anymore. Cos he left when we didn't know my symptoms were part of the Inflammation to the brain. All alone, asked the doctor, help me! No help. I tried suicide! Finally a further 6yrs on I am myself.
Hi there. I was diagnosed with Adeno although no laproscopy or MRI done. I was unable to get pregnant naturally and then 1 miscarriage with a fresh cycle. But I was successful in my second cycle and now proud mother of a 4 month old! I had painful periods and the consultant could see some growth through ultrasound so he diagnosed adeno. I was then put on downregulation protocol for 1 month ( sorry can't remember the meds name) and subsequent transfer FET.
I just want to say that it is not so horrible and many women have successfully delivered after an Adeno diagnosis.
Ah thanks for replying PepMo, really appreciate it! So great to hear that you had your 4 month old. Sounds like a lot of people have had success with downregs, really hope it works for me!!!
I’ve got adenomyosis as well. I was down regulated for each FET with prostap, and I’m on a high anti-inflammatory supplement and diet. For my fresh cycles I have much longer down reg with Buserilin. Adenomyosis is estrogen fueled (if I remember correctly) so the patches/tablets can make it feel worse (for me anyway) so the supplements and diet are key for me. I’ve only had a chemical pregnancy and no success on my other transfers yet so no idea if it’ll ever work but still trying.
Hi there! I had a laparoscopy done in January after repeated failed implantation, even though everything else was great. They found adenomyosis + 2nd stage of endo + the biopsy of my uterus showed chronic infection (I had no symptoms at all, i could have had it for a year , who knows...). Doctor said that nothing can be done about Adenomyosis, they cleared my endo and gave antibiotics for infection.
Oh wow, thanks Annbiel - that's very interesting! I don't know why but i'm convinced I have an infection or something, just with no symptoms. We'll see! Have you had any luck since they cleared your endo and gave you antibiotics for the infection?
8It's so similar to Endo. It comes under the umbrella of Endo! They have loads of ideas. Endo back in 70's 80's gave monkeys in US plastic/ polystyrene to eat, most got Endo. The appears to be a chemical link with the products we use. Endo can be past through as genes maybe sometimes changed. Endo has been found rarely in men during Operations for Prostates, yet men are symptom free. Some woman with Endo have no symptoms. There's black yellow red and unseen. It can causes various issues. Pain , inflammation, swelling, bleeding, adhesions, scars, distortion of interior, pain during intercourse, issues with bowel including bowel emptying. Infertility. In rarer cases it appears beyond the pelvis and bowel into lungs with various issues. Very rarely it has been found in the head.
I've had it in bowel, pelvis, lungs, spine, and ears. During my 30's my lungs would bleed monthly, with fluid in lungs and earing issues but this was stopped by prescription drugs. I had Pancreatitis issues for several yrs yet they didn't want to physically check to cause damage to me since then the symptoms never returned. I still have symptoms, pain since menopause in spine, bowel and pelvis. It has reduced but stops with walk distance, cycling, some types on movement. My pelvic organs and bowel are bedded down. Pouch of Douglas still poor. I had to change my diet to be Gluten, Lactose free also foods with Histamines in. I can not eat mushrooms anymore or mannitol which it put in some drugs or cakes. I do have allergies, Asthma in last ten yrs and now Reflux issues. I also can knowlonger use any l Lidocaine or similar of the caines as they don't work properly and cause huge inflammation and swelling so most things the Hostipal do to me I have to be put to sleep with other types of anesthetic.
How weird, I literally just read that today... that endo has been found in someone's retina before. Absolutely crazy. That is the difference between endo and adeno...endo can spread throughout the body, whereas adeno is only found in the uterus.
Hi Esb27, I've been diagnosed with adenomyosis a month ago in a post-myomectomy ultrasound. Except for the enlarged uterus, I don't have any other symptoms associated with this condition and never even heard of this until the ultrasound results came back.
My doctor told me it should not affect implantation, as adenomyosis is in the myometrium and the embryo will implant in the endometrium.
I am a big believer in alternative treatments/supplements/antioxidants: they helped me with egg quality and reducing the size of fibroids before surgery. After doing my research on how adenomyosis can be treated, I came across this study: sciencedirect.com/science/a... where 70% of women were cured from adenomyosis and 30% saw an improvement in the condition.
I am currently having weekly acupuncture sessions, based on the protocol specified in the study. Hopefully it will work, but in any case can't hurt, as acupuncture is meant to improve fertility and help with implantation.
I agree with you 100 per cent about finding alternative methods however I just wanted to point out that it depends on what type of adeno you have as to whether it affects implantation or not. I have diffuse adeno which unfortunately is all throughout my endometrium. Just something to think about. Thank you for posting that study though, very interesting. X
Hi Kimbob82, you are welcome 😊. I also have diffuse adenomyosis, so I'm hoping my doctor's comment was made in reference to my ultrasound results. I also read that it was the focal one, rather than the diffuse one, associated with infertility (diffuse one has been associated with worse dysmenorrhea), especially if focal adenomyosis is located in outer myometrium: ncbi.nlm.nih.gov/pmc/articl....
It's obviously not a one size fits all and every Dr seems to have a different opinion on the subject. But I've never had a painful period in my life so I have had zero dysmenorrhea and it has absolutely affected implantation in my situation. I've just ordered some serrapeptase on Amazon as I've heard that can help, as after all the estrogen fuelled IVF cycles we've done, I figure there's no harm in trying to slow the disease down. Even though I don't have any painful symptoms now, who's to say I won't in the future. We're moving onto surrogacy anyhow, but wishing you all the best!
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but my consultant says it it more than likely due to chromosomal abnormalities in the embryos, linked to my age. Moving forward, we will test embryos. The adenomyosis causes horrifically painful periods that are difficult to manage but I don’t worry too much about it and IVF as I’ve been led to believe that it shouldn’t be too much of a worrying factor. Wishing you all the best xx
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