Adenomyosis, and hysterectomy

Hi ladies, just wondering if any of you have been diagnosed with adeno, without endo, and had a hysterectomy, if you have what was the pain like after, was it completely different from before op pain,

And also if other ladies have both adeno and ENdo and have had hysterectomy, did/as ipt helped eith your endo

Ive Got my hysterectomy on 18th July, and have both conditions, so I'm obveriously nit 100% what's causing most of my daily pain, I'm sooooooo hoping it's the adenomyosis as this will then be cured by the hysterectomy.

I could do with some reassurance, but also want to hear from people either way, good or bad

27 Replies

  • Hi, I will be interested to hear responses to your question, I had surgery last week for Endo. I also have adeno but the consultant says this can only be removed by hysterectomy, since only 27 and really want a family this is not an option at the moment. However this is what has been suggested for the future. I am just hoping the Endo surgery will allow me to have a family and have reduced pain for a while.

    Hopefully someone will be able to give some helpful advice to you

    All the best


  • Hi Nicola,

    I just wanted to say it may be worth enquiring about magnetic resonance-guided focused ultrasound (MRgFUS) as a treatment option for adeno. Whilst hysterectomy unfortunately still remains the only definitive cure for adenomyosis it is obviously not the best option for young women/women who wish to conceive. MRgFUS is quite a new approach and I don't know how readily available it is as yet in the UK but there is some research to suggest this could be a viable treatment option for adeno without compromising a woman's chances of conceiving.

    I hope this is of some use.

    Best wishes, Jo x

  • Thank you I will look into it


  • hey, what is this procedure you mentioned? I'd really like to know more!

  • Have you had a lap to identify extent of endo? The only way to really get rid of endo is excision by a skilled specialist, see the list on this site. I'm no specialist but I've taken lots of advice and listened to discussions and this seems to be the concensus and opinion of top professionals like Dr Redwine.

    That said you can have excision and still feel like crap because of the adeno - that's me! Still I'm cautious of hysto as my main issue is fatigue and I fear the menopause will make worse.

    Look at a lady called Lindle's page I think you will find posts / discussions there to inform you. She really knows what she's talking about.

    All the best. Sorry not to be straightforward, these illnesses just aren't is what I've learnt :/

  • Hi thanks for reply, I have had endo excised, and I won't go into menopause as my overies are staying put, I'm having a total hyst, not radical.


  • Sorry then telling you what you already know. Have you been on GNRHs prior to getting booked in for hysterectomy? Did they help? My Dr and most seem to recommend them first. I'm not keen

  • Hi,

    I was diagnosed with endo when I was young and pcos. I then discovered in 2011 I had adeno.

    I had my TAH in March 2014 at 32 and other than some up and downs with hrt my life is 100% better. I have been pain free for over a year when at one point I was lucky if I could be pain free for a day!

    I was advised by my consultant that there may have been some spots that they hadn't got to (highly doubted though) and there is a small chance of a regrowth but I don't think I will!

    From my point of view my hysterectomy gave me back my life and allowed me to be a Mum who wasn't doped up on tramadol to cope each day.

    I hope your op goes well and this is the end of your pain xx

  • Aw thank you shall, that's a lovely reply, I'm the same atm, constant pain and taking 60 mg of morphine sulphate daily, and like you said being a mum under these drugs is hard work xxx so glad your is a good story x

  • Hello,

    I'm having a hysterectomy in just over a week. I've had two laparoscopies - one finding endo and the second not finding endo. My consultant thinks it is highly likely that I have adenomyosis and my pain improved when in zoladex, hence the hystercetomy. I'm wondering the same things as you!! I'll let you know how I get on with the op!!

    Sylvia xxx

  • Please stay in contact, and I wish you all the luck in the world xxx

  • I had stage 4 endo and adeno. I have had a hysterectomy 3 months ago and feel amazing. I haven't felt this good since I was 12. 35 years of pain, and it has gone.

    I had all my endo removed 2 years before my hysterectomy. I was in a lot of pain and discomfort for months after the complete endo removal, but, personally, I think that was in large part because of the Mirena, although there is no way I can prove this. I had had endo removal on two previous occasions and the pain then was limited and easy to deal with.

    After the hysterectomy I needed no painkillers whatsoever, although I felt so good that I couldn't keep doing nothing for long enough and two weeks after I did something very stupid indeed (gardening) and severely strained all my muscles, which was extremely frightening and set me back a long way. You should make yourself do nothing but take short walks and watch daytime tv for six weeks and you'll be fine.

    Honestly, I am a different person following the hysterectomy. People have said they can see it in my face, others have said that they never knew I had a sense of humour!

    My only regret is that I wish I had done it when I was 30. Now I am going to pack as much living as I can into the years ahead.

    Very best of luck,

    And I am going to say once more: if you are used to the pain of endo and adeno, post hysterectomy pain is nothing, it didn't even register on my personal pain scale as pain BUT you must take it easy, those stomach muscles need a good six weeks of doing nothing. We endo/adeno sufferers are used to ignoring pain and sensation from that area and ploughing on with our lives regardless, I have had to retrain myself to notice even the smallest twinge so as to stop straining those muscles which need time to heal. Be as lazy as you can afterwards, learn from my mistake.

  • Wow I am so pleased it worked for you..I am awaiting a full hysterectomy which my consultant said it can be a 8 month waiting list for it..I am on propstap injection and hrt tablet while i wait for the op..I also have been in terrible pain since starting my periods at the age of 13 now i am 45 in July..I missed lots of days off work when i was younger due to my periods..I am now currently on the sick from work and have been since Jan this year..I was wondering if you had the injections before the op and also did you miss a lot of time from work with this stupid illness we have.

    Take care Sharon x

  • Hi Sharon I no your question

    Was for memyseld&i but I just thought I'd say, I desides not to have the injections before, my reason being 1 I just want it over with, and he wouldn't put me on list until I finished 6 months, wearas now I have a date for 18th July, 2) I didn't like the sound of the drug, 3) the thought of it shrinking the endo and that being to small to see when they go in the do hyst, scared me, and obveriously he will excuse all endo if any left, good luck and I hope you don't wait too long xxx

  • Thank you for your reply hun..I hope everything goes well for you..I too just want it all to stop but my gyne specialist put me on the injection because of the long waiting list.I paid private to see him for the consultation because that was upto a 40 week waiting list just to get to see him. I am so glad i paid because i now just have to wait for the op..I feel so depressed and want it all to come to an end fed up of feeling like shit every day of my life..Well take care hope all goe`s well for you xx

  • I know what you mean, it's not a life living like this, have the injection helped you,?

  • Not at the moment hun gong for my 2nd injection tomorrow so i am hoping they will help xx

  • I didn't have the injections. I know it might sound stupid, but I felt I was hanging on to my job by the smallest of margins, I was generally bad tempered and easily irritated and I was really scared that having the injections would make me worse and that I might do or say something really bad.

    I couldn't go on as I was, and I reasoned the hysterectomy would mean I would be off work while my hormones settled so no risk of me swearing at anyone! Actually, I was so much happier right from the moment I had come out of surgery but I started taking oestrogen only HRT 3 weeks after the hysterectomy and I feel emotionally more stable than I have since I was a child. For example, I don't cry anymore, whether that was the pain or the hormones or the tiredness I don't know, but I used to find myself sobbing over adverts or at the sight of something like a squashed bird in the road. Now I think, 'that's sad' but it doesn't reduce me to tears, and I don't cry when I get cross, which I used to do and which really reduced the power of any legitimate point I was trying to make.

    I have ended up doing a job very close to home and in a school so that I get lots of time off and don't waste energy commuting. If I hadn't had this illness I wouldn't be doing this job.

    Over the years we have moved around a lot, and that has meant I have had extended periods with no work which don't look too obvious on my cv, and which gave me excuses to hand in my notice but I haven't worked enough to have a pension, so I absolutely have to keep working now.

    I will keep thinking of you, take care


  • Omg, I'm crying now, thank you so much for your story, please let me be like you, all my friends keep saying about getting the real Tracey back, and tbh im not so sure that some off them even no me at all, ive been so um I don't quite know how to describe it, sort of only half of me, I can't wait, 56 days to go, lol, xxxx

  • Me too!! I have lost all my confidence and get anxiety about the smallest things, don't enjoy anything any more, can't keep up a conversation for long, I could keep going with many more things!!! I don't feel like a normal 26 year old and feel so jealous of what other people my age get up to! I sooo hope this will be the end to all my pain!

    I know this wasn't my post ladies but thanks for sharing!! It's so good to know you aren't alone!


  • Oh and shazzy70, I have had a year of zoladex injections whilst waiting and for the first six months it was brilliant - virtually no pain at all! There were many horrible side effects which I will go into if you want me to but it was totally worth it! Once I started having hrt with it, the pain returned 😥 xxx

  • Hi, I'm 10 weeks post op from major excision surgery for endo and total hysterectomy (ie uterus and cervix removed) for the adeno - surgery took almost 7 hours.

    My symptoms pre-surgery were: very frequent urination (every half hour with activity and every 2 hours when sitting still/trying to sleep), daily sciatic pain down the back of both thighs, daily nausea, daily headaches, bloating, stomach cramps, most days I felt like I was walking around carrying a bowling ball in my stomach, heavy and erratic periods and fatigue.

    Post-surgery the sciatic pain is gone, my headaches are less severe and not as common, the nausea is gone, my periods are obviously no longer a problem, the bowling ball feeling is rare but occasionally I still l feel it and I no longer need to wee so frequently (although I still probably wee more frequently than the average person but I had endo on my bladder shaved off so (a) this is still healing and (b) my bladder probably needs re-training as it's been so used to going so frequently.

    I still have some stomach pain and tire easily but my surgeon says this is to be expected at my stage of recovery.

    I kept my ovaries as my surgeon believes vehemently in persevering them due to the health risks associated with early menopause and using HRT. Unfortunately research indicates ovaries tend to stop functioning within 3-5 years anyway post hysterectomy.

    I hope this helps and that your surgery goes well. If you have any other questions please feel free to ask.

    Best wishes, Jo x

  • Thank you for you reply, I hope your recovery continues and your relief is long, xxx

  • I had a laparoscopic total hysterectomy and bowel resection 12 weeks ago after years suffering with the pain from stage 4 endo and adenomyosis. I can honestly say I feel great and it was the best decision I've made. I had 4 weeks off work and am feeling great. For me it was a good decision and the discomfort post surgery was nothing to the continual pain from adenomyosis/endo. X

  • Hi I have the same as you on decopeptyl injection s got another two to get could I ask if you had this before your surgery. I'm so down can't see an end to all my pain so so down xx

  • I had 3 months of zoladex should have been longer but consultant had a rare cancellation and was willing to bring my date forward. I felt hideous in last month all joints hurt and ached and endo pain remained. But as I said all pain has gone now so life is good-HRT is my new best friend x

  • Just to say that my surgeon strongly believes that ovaries are a cancer risk after menopause and women with endo are at increased risk of ovarian cancer anyway, so I decided to get rid of them. He said that HRT poses no extra risk until after the age of 55.

    Obviously medical opinion differs on the above and I urge everyone to look into both the research that supports keeping ovaries and the research that supports their removal, as, at the end of the day, it is each of us who has to live with the consequences of our decision. Your age may be a deciding factor too, but I think I would have made the same decision if I had been diagnosed at 30. My life has been scarred by my PMT alone, never mind the endo and adeno, and it is a huge relief to be free of it all.

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