Recently diagnosed with adenomyosis

Hello,

I recently found this site and am so thankful that I have this is my first post and I have a ton of questions. I am 39 years old and as the title says I have just been diagnosed with adenomyosis. I recently had a very heavy period with huge clots that last for most of a month other symptoms have been lots of leg and lower back pain and cramping even when I'm not menstruating. I finally decided to go ahead and get the depo shot and that has helped the bleeding. Before my Dr. diagnosed me with adeno she did a D and C thinking maybe it was just a hormonal imbalance however, when she did the hysterscopy she saw it was in fact adeno. She says my uterus is very enlarged so I will need an hysterectomy. I am ok with that I am all done having children. Anyway here are the questions that I have until I see my Dr. next Friday.

Is cramping typical with adeno?

Leg pain?

Long periods with large clots?

Any other symptoms?

Can adeno damage the ovaries?

Is adeno a precursor to lady cancers?

And for those who have had their uterus removed.

Has sex change?

How was recovery?

Is the pain gone?

Thank you for any replies!

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8 Replies

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  • Hi Tofunut!

    Welcome! I'm just finding my feet with the site also, although I have been a member for a year.

    There are so many severities of endometriosis, and comes in different yet similar symptoms. Yours sound terrible and do hope you get support and help you need.

    These are great questions for your doctor.

    I had 2 laposcomy (not sure how to spell it) and have had about 3 years of horrendous period pains and ovary pain leading up to the ops and still now but not as long or anywhere near as painful. But unfortunately now and then suffer with cramps bad enough that I don't want to move in case I pass out.. My understanding is that ends is not linked to cancer, but still a valid question to get an answer from a professional. I am 32 and hoping to start a family soon, although concerned that I have a large cyst on my right ovary, but have been told that I should be fine. I think in serve cases if endo is found in the Fallopian tubes or if cysts are big and twist this could cause damage to ovaries and tubes. I have had experience of large dark brown clots which have come during horrendous periods and pain like no other. Along with terrible aching lower back and pelvis... I also find that when I had bad aches and pains in my back and pelvis that I get terrible wind! My partner thankfully finds it hilarious but can be painful and embarrassing.... Anyway hope this helps, good luck at your appointment.

    :) xx

  • Yup most of that sounds like my symptoms. I only have adeno thankfully. Those of you ladies who have both I can't imagine the pain adeno alone is horrendous!

  • Hi I'm 11 wks post op from major excision surgery for endo and a totol hysterectomy (ie uterus and cervix removed) for adeno. The surgery took almost 7 hrs. I also am 39.

    Post surgery my symptoms were: very frequent urination (every half hr when active and every 2 hours when still including trying to sleep), nausea, sciatic pain down the back of both thighs, headaches, stomach cramps that weren't just limited to my periods, bloating, the feeling that I was carrying around a bowling ball in my tummy constantly and erratic and heavy periods with large clots (sorry if tmi but one time I even heard a huge plopping noise as I sat on the toilet as if I'd just passed a stool but in actual fact it was a huge clot!).

    All of the above symtoms can be linked with both adeno and endo so it's hard to say which condition caused which symtoms unfortunately.

    Post op - I no longer wee as frequently but probably still more frequently than the average person (suspects bladder has to be retrained plus I had endo shaved off my bladder so it's probably still recovering), sciatic pain gone, periods obvisouly gone and up until a few weeks ago the nausea and headaches had gone too but unfortunately I have developed a problem emptying my bowels since surgery and the constipation is causing nausea, stomach pains/cramps, bloating and gas issues 😒. Not sure at the moment what's causing the bowel problem. Both my GP and specialist want to give it a bit longer before investigating 😒. I can't comment on sex as I quite simply haven't felt well enough to go there. I did have a very painful 10 week post op internal exam but I think under the circumstances that's to be expected sadly.

    Although adeno is similar to endo (often referred to as its cousin) it differs in that it only effects the muscles of the uterus walls so no it does not effect your ovaries. If you'd like more info on adeno Google the adenomyosis association as this is great, informative website.

    My specialist believes it's important to preserve the ovaries due to the health risks associated with early menopause and potential risks with taking HRT. That being said research indicates that ovaries tend to stop functioning within 3-5 years of hysterectomy.

    I don't regret the surgery. If I weren't experiencing the problems I have with my bowels at the moment I feel sure I would be feeling so much better and further forward in my recovery.

    Hope this helps and if you have any questions please feel free to ask.

    Best wishes, Jo x

  • Thank you so much. This did answer alot of my questions. I do not have endo as far as I know and I'd like to say the pain of adeno alone is more than enough. I can't imagine having both.

  • Hi - although adeno and endo often accompany each other you don't actually say if you have been diagnosed with endo as well. The symptoms of adeno can be pretty much the same as endo in what is called the Pouch of Douglas so endo could have been missed there but be masked by the adeno symptoms. Have you had a diagnostic lap for endo? A hysterectomy is ultimately the only cure for adeno and it won't affect your ovaries if they are free from disease but without a uterus you might go into menopause earlier than normal and might need to think of HRT somewhere down the line. What is vital is that you are free from any endo as this can contiune after hysterectomy and be aggravated by HRT if you did take it later on. There is no evidence of adeno being linked to cancers. Click on my name and have a look at the link on adeno and on POD endo and if you think there is any chance you might have endo as well I should consider a referral to an endo centre for a thorough surgery to include a hysterectomy to ensure you are free of both. x

  • Thank you very much. My hysterectomy is September 3 and I do not have edno just adeno. Thank you for answering my questions.

  • Hi,

    I'm had my diagnosis confirmed recently.

    Leg pain is a big indicator that adeno is involved rather than endo. The cramps and clots are symptoms too. Adenomyosis relates to the womb specifically - the endometrial lining infiltrates into the outer muscle layer (myometrium) causing damage, inflammation and changes the biology of the muscle cells in the affected areas. The ovaries aren't involved, though if you have concurrent endometriosis they may be damaged by that.

    Here is a website that has helped me understand a lot about adenomyosis.

    m.adenomyosisadviceassociat...

    I'm not a doctor but Google informs me cancer arising from adenomyosis is rare, so all good. I'd ask your consultant about this if you're concerned.

    Unfortunately I don't have anymore answers - my adeno was suspected at 27, confirmed at 29 and the docs won't sigo off on a hyst as I've no kids so just have to put up with it. I'd be really interested to know how others have got on with hysterectomy - recovery, sex life etc. Particularly if you've been on prostap before - I've experienced menopause with this, but is it any different in reality?!

    Tofu - I know the organisation in the link above have a fb page and there are various other closed groups on fb to do with adenomyosis - you can post and none of your contacts will be able to see unless they themselves are part of the group. I know they talk about hysterectomy all the time so there would be more info for you xx

  • Thank you. My hysterectomy is in September I'm sure I'll have a ton of questions shortly after and hopefully will have answers for those asking as well.

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