How common is adenomyosis? : After reading... - Endometriosis UK

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How common is adenomyosis?

Kazww profile image
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After reading about this I have many symptoms. Does anyone have any experience of this and how it starts etc please

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Kazww profile image
Kazww
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13 Replies

In answer to how common Adeno is I'm afraid I don't know. I found one website that said it was rare to have both endo and Adeno (which I do) but I doubt this is true as I've read many posts on here and other forums of women suffering from both.

Re: symptoms. Mine started with irregular periods. Use to always be on a 28 day cycle + or - 1 day and over space of 6 mths it was irregular ranging from 24 days to 39 days. I thought maybe it was the perimenopause. My last 2 periods have been ridicously heavy - sorry if tmi but I was wearing pads and Tampons, still flooding with massive palm sized blood clots and having to change them every 2 hours. I also have have found (again sorry if tmi!) that after 1st 2 days I could no longer insert tampons. As time has gone on and I have read more about adenomyosis I can pretty much tick all of the symptoms now. Sciatic pain particularly down my left thigh most days now, headaches that cocodymol doesn't touch, nausea, some diarrhoea, a pressing down in my uterus (never given birth but it feels like my body is trying to) and mood swings. Unfortunately as I have endometriosis also it's hard to know which symtpoms belong to which! Also an internal exam was very painful - tender uterus with cervical excitation was the term the specialist used. I also have one other strange symtpom that I found on a website which said it could be related to Adenomyosis. It might sound strange but I've been belching a lot. I do not normally belch, my husband can vouch for this and has been shocked by the amount of burping I have been doing. It usually coincides with the nausea for me and is a bit of relief when I burp for some reason. Hope that helps.

Kazww profile image
Kazww in reply to confusedandworried

You sound very much like me, how old are you? I'm 39 periods have always been painful first two days but then not too bad and used to only bleed for 4 days, last few months I've been every 3 weeks, much heavier and for longer. How did you get diagnosed with adeno as I thought this could only be diagnosed after hysterectomy? I have back pain and around my uterus area is so tender but the worst pain that I've had constant for two months now is in my hips it feels like someone is trying to push them apart. How long did it take you to get diagnosed I'm so stressed I've been off work 4 weeks now and suffering for nearly 8 weeks. I have hysteroscopy in two weeks but the pain is unbearable and my tablets don't take the edge off it anymore. Thanks for your messages is so good to talk x

confusedandworried profile image
confusedandworried in reply to Kazww

Hi, I'm 39 as well! I had a biopsy through hysteroscopy done but it didn't show anything. Consultant wasn't surprised as he said quite often it doesn't. It's been diagnosed on an educated guess on behalf of my endo specialist as symptoms fit and other suspects have been ruled out. He told me that it may not even show up after the hysterectomy which is scheduled along side excision surgery for endo in a couple of weeks time. Apparently they don't test all of the uterus as it would take too long so they only test a small piece. If it's diffused throughout the uterus and the bit they test doesn't have any Adeno on then they just assume they are correct based upon symptoms before and hopefully lack of symptoms after the hysterectomy! At first I was unsure I wanted a hysterectomy based on an educated guess but as my symptoms have progressed I just want it over with. He will leave my ovaries though as he believes vehemently ovaries are important due to the health benefits. That being said I read there is a 50/50 chance my ovaries may go into shock after the operation and may not function again. Also I read typically women go into the menopause anyway within 3-5yrs after a hysterectomy with the ovaries being preserved anyway. I just hope I don't swap one set of symtpoms for a whole other set but I can't carry on like this so that helped me reach the decision. I forgot to mention bloating and weight gain also despite exercising every day for 1.5 - 2hrs (even when in pain and exhausted) and keeping to a calorie and content controlled diet - grr! I just hope that'll change afterwards too! Best of luck

Kazww profile image
Kazww in reply to confusedandworried

I have all of your symptoms but have not been able to work for 3 weeks now and been signed off for another two the pain in my hips is too bad and pelvis tablets aren't touching it, I'm laid up on sofa with hot water bottle every day feeling really down now as haven't really been out of the house other than to the shop or to walk the dog. Did you get offered a hysterectomy straight away? Xx thanks so much for taking the time to message me I really appreciate it can I ask what area you are in please? X

confusedandworried profile image
confusedandworried in reply to Kazww

I'm so sorry you feel so bad at the moment 😞. In some respects I'm quite lucky at the moment as I'm not working. I don't think I could at the moment. Sitting down for too long aggravates my sciatic pain as does doing too much - it's hard to find the balance. Also I am exhausted all the time and my legs feel like I'm carrying around lead weights. In addition I need to urinate so frequently I'm awake during the night every 2 hours needing to go to the toilet. Adeno can cause this but I also have endo on my bladder so it could be that causing it, who knows!

I am in northamptonshire but my consultant is actually a private endo specialist in Leeds. He picked up on the fact that it was likely to be Adeno very quickly - just from the initial consultation and internal exam. However he then did his due diligence and ruled out other potential suspects. He offered me a hysterectomy only because of my age (39) and my resolve to give up on the idea now of having children. I just want to improve my quality of life now for myself, my husband and my lovely dog! He will however leave my ovaries as he vehemently believes this is important due to the health benefits.

The hospital is 2.5hrs away from me so I can't say I'm looking forward to the journey home after the op but it wasn't too bad after he did my diagnostic lap and hysteroscopy so hopefully it'll be fine. The consultant comes highly recommended by others on this and other forums so I have my fingers crossed this is my best chance of improving my quality of life.

Kazww profile image
Kazww in reply to confusedandworried

Oh wow I am also in leeds where do you see your consultant? It's a small world. Xx

confusedandworried profile image
confusedandworried in reply to Kazww

It is a small world! My consultant works out of the Elland Spire Hospital. He pioneered a technique called total peritoneal excision for endo. It's quite a radical approach with some saying it's overkill to remove the whole of the peritoneal lining and that a good surgeon can just excise the bits necessary. However there is some debate still over the existence of microscopic endo that means if it does exist it could get missed by only excising parts. Also to rely on a surgeon to be that good that he/she won't miss any endo has not worked for me in the past. My previous endo surgeries have taken about 2 hours and there is the risk with each op of developing scar tissue and adhesions which can cause further problems in themselves. This surgery, to remove my peritoneal lining, shave the endo of my bladder and bowel, remove the chocolate cysts from both ovaries and one of my tubes and remove my cervix and uterus due to the adeno, is going to take 6-7hrs. He is thorough and whilst he offers no guarantees and does not claim to cure endo other women who have been treated by him say it's as close to a cure as you can get. I'm having to take out a loan to fund the shortfall that my private health insurance won't pay but if it improves my quality of life it'll be worth it. Am so coming back as a man in my next life 😝 x

rach1626 profile image
rach1626 in reply to confusedandworried

I know this was a long time ago so I’m hoping you’re well now 🤞 I’m currently going through he same thing and am interested in seeing the surgeon you had as I am based in Leeds. Thanks xx

confusedandworried profile image
confusedandworried in reply to rach1626

Hi I am doing much better. I had my surgery in 2015 but did require a further surgery in 2017 to remove a pesky endometrioma that had reformed & the new surgeon I used also found 1 presumably missed spot of endo, some scar tissue to remove & had to widen one of my ureters which previously had endo excised from it. I happy to say I am 90-95% better. To be fair I never expected to be 100% because I don’t think you can suffer with endo & adeno for 20+ years & then expect to be perfect. Unfortunately I believe Mr T has retired but if you want to PM I can give you the names of some other surgeons who come as highly recommended. Also if you aren’t a member of the Facebook group Endometropolis then I’d recommend it. You’re able to openly discuss surgeons & ask for recommendations. Best wishes & all the best

rach1626 profile image
rach1626 in reply to rach1626

Thank you so much! Really good to hear you are feeling well. I had a lap in June after 2 years of suffering and trying the contraceptive pill/Mirena as treatments. They didn’t find any endo but was diagnosed with Adenomyosis following a further scan. I wasn’t fully happy with the surgeon who did my lap so would ideally like to change to have a hysterectomy (I’m 38 with two children at 9 & 12 and definitely don’t want anymore!) but I can’t seem to find anyone specialised in Adenomyosis outside of London. Thank you xx

lisarichy profile image
lisarichy

Hi im also 39 and i had a laparoscopy last monday ... for about 5 years ive been in constant pain suffered from very heavy periods with clots and very severe bloating constant back ache painful intercourse etc !! i had a scan last year which showed nothing then after having an internal scan about 4 months ago i was told i had a chocolate cyst on my right ovary and a tilted womb, but when i went to see my gyne she said she suspected that i had endometriosis when i mentioned all of my symptons ! sure enough i did have endometriosis and quite a massive mass of it on one side she said it had puckered (her words) that much it had left a massive hole inside , she also did a bioposy through hysteroscopy and she also said she thinks i also have adenomyosis and that my uterus was massive ... i also got an novasure endeometrial ablation for my heavy periods as im finished having anymore children i already have 3 girls ... BUT i still may have to get a hysterectomy yet ! im seeing her in 10 weeks time so i suppose it ll be then she ll decide whats going to happen next ... hope you get sorted best of luck xx

Kazww profile image
Kazww in reply to lisarichy

I'm due to have a hysteroscopy in two weeks I didn't realise that you could tell from a biopsy if you had endo or adenomyosis? I thought a biopsy was only used to test for cancer or not. Did you get your results from hysteroscopy the same day? Xxx thank you for your message xx

lisarichy profile image
lisarichy

Hiya sorry for late reply no i havnt had the results from my biopsy and i think the reason i had one was for my endeometrial ablation she did say that she does think ive got ademomyosis and that ill most probs have to have an mri scan so she knows exactly where shes going if i decide to have more surgery xx

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