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A New Life After Adenomyosis – Donna’s Story

I had a total hysterectomy cut through my stomach last year and to be totally honest I was terrified. I had heard so many bad things that could go wrong and kept putting it off.

My problems began nearly 15 yrs ago after I was sterilised. My periods became heavy and just seemed to get worse every month. However you just put up with things especially with two young children. After three years I went to my GP who referred me. I was put on the mirena coil but it took a 18 months to work and then after three years my body rejected it.

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My only option was to have a hysterectomy, but I declined as my children were still really little. So after many pills I was ok for quite a few yrs.

Five years ago pain struck and, although the pill was keeping me from bleeding, I was having a cycle and the pain sent me to bed every few weeks. I have never experienced pain like it, pain in my lower stomach, back and my legs.

When I lost my dad three years ago the pain got worse, and my husband pushed for me to be referred again.

My consultant thought I had adenomyosis but couldn’t diagnose until everything was taken away so there was a chance I could of had the op and still had the problem. So, in Feb last yr I went for it as I couldn’t carry on with the pain anymore.

I haven’t looked back, no pain and I have life back. I had no complications and sailed through the recovery. When I went for my six week check-up I was told that yes I did had adenomyosis and was totally relieved. My only concern was that I wish I had done it 10 yrs ago. I was 42 when I had it done so am now on HRT and have had no problems. I hope all my problems are over once and for all.

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in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

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Linda Parkinson-Hardman

Transformational coach and founder of the Hysterectomy Association. Professionally I'm an information scientist who specialises in the adoption and engagement of digital technologies. I am a writer and author of nine books to date, and I've edited a further seven; phew what a lot for a Thursday afternoon :-)

This Post Has 34 Comments
  1. Hi, I hv been diagnosed with adenomyosis from past 8 months, I hv severe pain on the left side of my stomach 24×7.Due to this this pain I hv to take a pain killer tablet by name Diclomol atleast 4 times a day to control the pain .Doctors say the only cure of this desease is by hysterectomy. Pls can anyone suggest me what shld I do and can that really work to get rid of this life thretening pain.waiting for some replies.Thank you

  2. Hi Rachael I’m so sorry I haven’t replied to you sooner I’m afraid life has taken over what with work family and home I seem to not go on here as often as I should do. I’m so sorry to hear you are in so much pain it does sound very similar to the pain I was experiencing. And yes it was so worth it for me I have not looked back. No pain no periods = happy life. In fact I’d wish I had gone through with it years ago. I hope the operation went well please let me know how you got on. Xx

  3. Hi Donna! I just want to cry when I read your story. I lay here in pain right now trying to convince myself that this severe of pano can be caused by adenomyosis. My stomach feels like it is on fire, my legs hurt so bad all the way down the front and back, feels like I am about to deliver a bowling ball the pressure is so intense, no appetite, fatigue. Did you experience any of this? Scheduled for hysterectomy on July 10. Scared to death, but I honestly cannot go through this pain anymore. Trying to decide whether to keep one ovary or both. I hope you can contact me via email or this this site. Please tell me it it this bad.

  4. Hi ladies I’m having a hysterectomy on thurs 17 th jan 2013 due to fibroids , i have had many small opps and five miscarriages and have three children one of which was born premature six months ago so I’m so concerned about bottle feeding due to not being able to lift him, as its open surgery my ovaries are staying, any hints or tips would be so grateful xxxxx

  5. who much walking should you do had mine 3 weeks ago just started walking mums 7 doors away put when do you up that

  6. Hi ladies – just been reading your comments as I am off to see my consultant next week and I know he will offer me a Hysterectomy. I had a pelvic repair, uterus and bowel Jan 2011, I returned in Oct 2011 as I had severe pain which turned out to be a large cyst on my ovary which was removed. Since then I have suffered with chronic pain in my left hand side and lower back which keeps me awake at night and can literally take my breath away during the day, my periods are heavy and coming every 2 weeks now :(( I am just at the end of my tether and really tired so have made the appointment for the inevitable. I am however encouraged to hear your stories and can’t wait to resume a normal pain free life, I am 47 and have suffered since I was 14 – at the age of 30 when I had cancerous cells removed I was told I was a high candidate for a hysterectomy, I just wish it had been done then – they wouldn’t do it in case I wanted more children – I told him I didn’t and I didn’t !!! Wish me luck I will post another comment post op.

  7. Hi Emma, you’ll be mobile from day one – albeit only walking around the bed and going to the loo. The more you walk though (paying attention to what your body wants too) the quicker you will recover, so a few extra steps every day will work wonders. As for pain, you should be pain free within a week or so, unless you pull, stretch or lift anything you shouldn’t 🙂 I’d consider waiting until the end of February before moving if you can – to give yourself 3 good months of recovery.

  8. Hi I had the hysterectomy on the 15 th of oct this year I am getting there slowly the pain I was experiencing before hand was a nightmare taking painkillers to get me through each day at work. Since the op I have no pain apart from maybe if I overdo it a little I have had a fair bit of discharge and bleeding .It has fairly knocked the stuffing out of me as they say time is a great healer.Walking each day helps the body and the mind till I return to work.

  9. Hi Tracey. I had a total hysterectomy together with the removal of one ovary on 10th August (so same as you). I am usually a strong, confident person, but turned into an emotional, crying wreck. It was not until last week (11 weeks post-op) that I started to feel like myself and the crying stopped. I feel much stronger and confident. I dont think you will need counselling, just give it a bit more time and you should be back to your old self (only better and with no pain!). Take Care xxx

  10. Hello
    I have suffered from all sorts of gyni problems since I was 19 , 11 operations in and now 43 I am due for one on the 13th November. I have had 11 miscarriages, suffered from cysts, heavy bleeding , sever endometreosis etc, etc. I have never managed to carry a child past 2 months so its really been a long battle for me. I am a little nervous as I had a large fibroid removed 18 months ago which turned out to be andomyosis and not very nice. it took a long time to recover and then my symptoms returned. I was abalted and sterilised last May but yet again it didnt work. I have been in and out of bed for 3 months now with all the symptoms you hear from others on the site and only hope that I can return to full health after this op. I am due to move to Europe for 12 months and was hoipng to leave by the end of November but i think I will need to wait until the end of jan now. can anybody give me an idea of when you start to feel mobile and pain free? I am going to do exactly what they advise me to do for a full recovery as I really hope this is the big fix but i do need some realistic time frames if poss …thanks…

  11. It is common to have an emotional reaction Tracey – this can be caused by a variety of factors, including a reaction to anaesthesia, your body’s reaction to having the trauma of surgery (post surgical blues), your hormones going into a bit of a free-fall and finally, how you feel about yourself after losing your womb. In most cases it clears up by itself because it is a physical, not a psychological, reaction.

  12. Hi, I had a total hysterectomy on the 28th sept. I was very lucky that I had the procedure done by keyhole so have six small scars across my stomach. I have one ovary left so am not going through surgical menopause but I have never felt so emotional, a work colleague has suggested counselling but I feel that I shouldnt need it after having a hysterectomy! Did anyone else have strong emotional problems after having their op? xxx

  13. I had a total hysterectomy on the 1st,October 2102 and feel great. Like the other stories I have read I too am suffering from swelly belly and get really tired quickly. It’s only been 3 weeks since my surgery but already I am feeling the benefits. I had an abdominal hysterectomy due to large fibroids, bleeding and bladder problems. I am 45 and was very fit prior to surgery. My main problem now is trying not to overdo it! I’d love to do more but know this will hamper my recovery so I’m being sensible, walking every day and resting at regular intervals. I do get tired quickly but compared to last week I’m feeling better every day. Things are looking up and I already feel like my life is going to be so much better from here on in!

  14. Hi ladies I’m 56 and had a total abdominal hysterectomy on Sept 14th 2012. This was an emergency procedure as a massive fibroid was pressing on my bladder preventing me from passing water and I had to wear a catheter. The surgery and first 2 weeks of recovery went well but due to discomfort having to sleep on my back I’ve experienced mid back, knee and heel pain some days to the point of being completely immobile. This is where other muscles are compensating for the abdominals. I wasn’t prepared for this or for the exhaustion. Less pain in the abdomen though and tummy is starting to flatten so there is light at the end of the tunnel.

  15. Hello Amanda, I read about youre hysterectomy and can see it is similar to my symptons. I am having and Abdominal hysterectomy because of large fibroid and smaller ones and frequency to urinate, on Tuesday and am terrified, is the pain bearable? I will be staying at my Daughters for 2 weeks then home, my work is doing admin and they are expecting me to be well enough to return after 6 weeks do you think that would be conceivable and was your hysterectomy abdominal? Kim

  16. Yes that would be my next step if only i could get into see one but i will try many thanks for replying will keep you posted on how i get on .

  17. Hi i’am 37 years old and i have been to my doc’s a number of times regarding me having a partial hysterectomy and have been fobbed off each time try this consider this i have had injection pill after pill bleeding after sex not all the time leeking when i sneeze or cough pain without a period what can i do to get them to do this op any surgestions please many thanks in advance Heather x

  18. There can be so many other benefits to sorting out problems Amanda and your’s a great case in point, of course this isn’t always the case, but I’m really pleased to hear it’s been so effective.

  19. I’m 47 and had a hysterectomy on 14th September for a very large fibroid (and some smaller ones). I didn’t think at the time that my symptoms were too bad (heavy, but not painful periods, frequent urination). I did have terrible lower back ache that was affecting my whole life, however, but didn’t put it down to the fibroids.

    Since then, my backache has completely disappeared and I feel young again! I am so glad I had the hysterectomy! Although i am only 4/5 weeks post op, i feel it has changed my life. My point is that rarely do you read that backache is a symptom of fibroids, but in my case it was the major symptom and I didn’t even realise (or dare to hope) that it was a symptom! I can’t wait to be fully recovered so I can be more active and pain free.

  20. hi ladies ive just had a total hysterectomy.(fri 5th oct 2012) i was sterilised after haveing my last baby some 16 years ago.after many years of painfull heavy periods and trying everything going.i.e: coils tabs you name it i was finaly told early this year i cud have a hysterectomy,its early days yet and im not gonna lie it is a massive op and a slow long recovery but i feel better already.i am a bit pissed off with the medical teams as there is no reason i couldn,t have had this op many years ago.i had 4 kids at a young age and have realy gone threw the mill the past 16 years since be,ing sterilised.im 44 now and can fully start enjoying my life as i get stronger every day.hopw this helps anyone who is goin through this at the mo.all the best ladies and stand up and be counted.xxxxxxxxxxxxxx

  21. The pouch will go in time, your stomach will naturally deflate, but it takes time to do so and doing exercise so early on may not have been helpful as the abdomenal muscles will swell to protect themselves while they heal.

  22. I had a full hysterectomy on 13 Sept 2012 and my consultant recommended hrt gel. I have been using it now for 3 weeks can anyone tell me how long it takes before it works fully. I am so weepy and if i dont put it on early in the morning i feel so depressed. I wish i had never had the op, with the downers and the pain from wind every day i feel i am never going to be myself again.

  23. had a abdominal hysterectomy ony recent 10th sept2012but i had a flat stomach and i know its early and tummy swollen but i have wished i had never had it i look 20weeks pregnant and when i looked on-line horror stories i read as i have said they had flat tummys now left with hanging pouch so down about it and doctor said it looked great wound and will go flat.will it ?????im doing the exercise all the time to much really but so concerned ..

  24. i had endometriosis since my periods started at 12yrs old. i lost 3 babies due to it. i have a bleeding dissorder too, so bleeding sometimes went on for weeks. i had mid month sydrome with terrible pain as well as my periods. i had one child at 22yrs old and was sterilised at 24. it was then that the endometriosis was discovered as the cause of my problems and not just ‘painfull periods’. i was smothered and my ovaries were stuck to my bowel and bladder. i was offered a hysterectomy but i felt i was too young. i endured 9 operations to keep trying to remove the endometriosis until finally i decided to go ahead with the hysterectomy at 39yrs old. it didn’t go well as they perforated my bladder and i needed a repair op. after the hysterectomy i thought i would be able to at last feel the normality that other women have..wrong! i was in pain and diagnosed with depression and put on tablets. five years later and a change of GP revealed that i had been going through the menopause with my one remaining ovary and the endometriosis had continued to spread. i had, hopefully my last, op to remove ovary and cysts on 10th September 2012. i am now researching the best HRT to start that won’t make me gain weight and work! my message is, don’t leave it as long as i did. if you’ve had children and don’t want anymore why leave the mechanics inside you hampering and sometimes ruining your life? i am hoping for some years that will, at last, be pain free and i can feel normal…whatever that is!!

  25. Hello Donna that is encouraging to hear. I am having a hysterectomy in a few weeks time, but also having a mesh tape removed at the same time so undergoing major surgery. I have been reading some negative comments about hysterectomies so it is good to hear the success stories. I have an andometic (I think thats somewhere near the word)womb which is very enlarged and I think is contributing to the pain. so its coming out! Here goes!,…Lizzy

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