Endometriosis UK
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Endometriosis and adenomyosis

I have suffered with endometriosis since I was 21.....I’m 39 now! Last year I also got diagnosed with adenomyosis.

I have had 6/7 surgical laps and diathermy to remove the endo, have tried the contraceptive pill, decapeptyl injections. I had a Mirena coil inserted last year following 6 months of decepaptyl.....since then my symptoms have returned as they do. My symptoms include pelvic pain, back pain and pain in the tips of my legs, irregular and heavy periods, chronic fatigue and constipation which has now caused me to also have diverticulosis.

I have decided and I am booked in for a total hysterectomy......I feel it is my only option and I am so fed up and tired of this disease affecting my everyday life. I used to be so carefree and happy but now I feel tired and miserable most of the time. I’m hoping that this operation will mean the end to my suffering.....my question is has anyone else had a hysterectomy at my age and felt the benefit from it?

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Hi I feel your pain, I have both of these too and I am 37, not considering a hysterectomy as my consultant said they rarely do that these days. Wishing you luck and hope you feel way better after your hysterectomy, do you have a date yet? x

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It’s awful isn’t it.....I’ve put it off for so long but really feel that there is no other option for me now and after 20 years I feel enough is enough now!

No date as yet but I’ve been told should happen in 3-4months time

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Yes it is, I think at our age they would take us more seriously re hysterectomy etc .... let us know how you get on x

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Hi Tinker im 45 and had a total hysterectomy in jan this year. They took everything including ovaries and cervix. Quite a straightforward op. I felt back to normal after 3 weeks. Im on a conti everol hrt patches i think its called. Ive never had a hot flush and feel great. Best of luck sweetie x

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Thank you I am hoping that I will feel like a new woman following it! I’m glad that you have recovered well and have had good results x

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Me and a friend of my have suffered the same. With both endometriosis and adenymyosis with polycystic ovary syndrome. I have been told I need a hysterectomy but would be dangerous as I had completed births and needed lots of surgery so have a large amount of scar tissue. So I continue to suffer with this but my friend she had the op last year and is doing amazing she has lost weight able to do exercise and feels loads better. We are both of the same age of you. Hope this helps you. You are feeling better soon. Take care. Xx

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I’m so pleased that your friend is doing well, I hope to feel the same relief after my operation xx

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Thank you. I hope you get sorted and feel good. Long time coming by the sounds of it. Good luck. X

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I hear you!!!!! I'm pretty much in the same boat so following this post with interest and wishing you the very best. I've just had my 6th lap and about to start Pop after being newly diagnosed with adeno (as if 17 years or so endo wasn't enough 😂) but am rapidly coming to the conclusion hysterectomy is the way forward - I'm just sick of the fatigue etc. Let us know how you get on x

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The fatigue is the worst isnt It......I am literally fit for nothing by the end of the day!

People don’t understand and think that I’m just tired from late nights etc....but they don’t get itcthatcit is so much more than that I could sleep the whole day around and still wake up with no energy!!

I will of course update on here once I have had the operation, I hope that in one you too will also get some relief x

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Hi, I just wanted to share with you briefly my story. I had total hysterectomy at 32. Both ovaries removed too. I have had constant back pain ever since. Last month I had bad period pains. I could not believe it. I’m not sure if you ever get rid of endo. I have been referred to BSGE centre in Liverpool. Bearing in mind it is 24 years since I had the hysterectomy. I feel I am going round in circles. Never realised endo can return and no dr has mentioned it. My point is do you ever get rid of it. I think it is very much surgeon dependant. I know that much more is known about endo now. In my day they thought hysterectomy was a cure. Good luck and if I can help don’t hesitate. X

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Thank you, I really do hope that this will be the end of it, I’m sorry that you are having problems again. Please keep me updated x

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I had total hysterectomy at age 43 after 25 years of endo and about 10 of adenomyosis. My specialist was loathe to do it "so early", but eventually agreed. Also had large fibroids. He couldnt take out my cervix because fused to my bowel by adhesions, but otherwise everything else gone including both ovaries (which I believe was essential for me). I was totally pain-free after about 4 weeks and since then have never looked back - such a sense of relief and a new lease on life. 15 years on and still have a bit of bowel and bladder trouble which they say is to do with adhesions, but I have not had more surgery since then. Pain is nothing like as bad as it used to be, but we'll see what happens. I am still extremely glad I had the total hysterectomy, and I wish I had done it a decade earlier!! Hope you get relief.

best wishes, Jennifer

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Thank you for your reply........it is very reassuring to hear that so many people have had good results following the surgery. X

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Thank you for your reply. It is very reassuring to hear that you have had a positive outcome from it. Hoping that I will also benefit from it xx

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Hi,

I just wanted to share my story with you. I had a hysterectomy inc cervix and 1ovary at 26yrs old. I had stage 4 endo involving bowel and ureter and after 6 laps I was then diagnosed wide spread adenomyosis. Like you i tried all the treatments and symptoms just kept on. I made a very hard decision to have the hysterectomy without having a family.

Well that was 12 yrs ago and with the exception of the removal of the second ovary last year I have had a much better quality of life.

The only thing I would ever change would having a baby but I could not have gone on like that.

I hope your hysterectomy helps you. My top advice is to make sure you have a specialist endo surgeon who gets all of the endo when they operate. My surgeon was very radical cutting back almost to bone in some areas (his words) and the surgeon last year was so impressed as there was no sign of any regrowth just my ovary entangled to my ureter.

My other top top is make sure you get professional emotional support. I did this too late after the op and wished I had talked before.

Hope your op goes well and get your life back after your op x

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Thanks for your reply - can I ask what prompted the removal of your second ovary?

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Hi,

Despite having 1 ovary left I went into menopause 2yrs after my hyst. A few years after that I had some pains so had an ultra sound and was told that my ovary was no longer visible and would have shrunk and died. Things then settled for some years. I then had the onset of low pelvic pain and constipation about 2 years ago. I got refered to an endo specialist who wanted to do an exploratory lap to check for endo and adhesions. The surprise during surgery was my ovary in tact and wrapped around my ureter starting to strangulate it. I had compilations as the ureter tore in the removal as I had already had a stent in my ureter after previous surgery to remove endo on the site. All in all a nasty surprise but it has helped my pain so much and we have now discovered that I have over active pelvic floor muscles due to all the surgery which explains the constipation !

I see your 3.5 weeks post op, I wish you a speedy recovery but don’t rush it. Look after yourself now and you will be better in the long run. I hope this brings your body some peace after this horrid disease 🙏

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Aw thank you for explaining - it sounds like you’ve had a horrid time but I’m glad to hear after all this that your pain is better under control.

I’m a bit pessimistic this week - and wondering what may or may not happen to my remaining ovary! I still have some Gnrh drugs in my system so it needs to waken up after that too!

Thanks again - really appreciate it x

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It’s such a tough time for you. Just try not to think too much and take it as it comes. You have had major surgery and your hormones will be all othe the place which doesn’t help the emotions. I’m sure your ovary will adjust in time and see you through. The dr thinks my ovary only failed as I had 2 other big stressful events in my life just after my op.

My sister had a hyst last year age 40 no endo but adenomyosis, she kept an ovary and is now great 😃. X

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Thank you if I still have problems after my op I shall ask to be referred to a specialist centre.

I’m so sorry that you never got your baby, I understand this struggle I had failed ivf and was told that conception would never occur naturally and so I accepted it and then found I was pregnant naturally, I feel blessed to have my miracle baby who is now 5 yrs old.

I hope that one day a cure that doesn’t involve removing all of our female organs will be found. I’m so pleased that you have had positive results though from your surgery x

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Hey - I am 3.5 weeks post total hysterectomy ages 36. Had one ovary and both tubes removed too.

Had a previous diagnosis of endo and the lab report post hysterectomy showed adenomyosis and a fibroid. My consultant’s letter says he thinks it was the right decision to do the op.

It’s a bit too early to say if it’s been a success as I am still taking painkillers and waiting for a couple of test results re iron levels and possible infection. I have done too much too soon and that has set me back a bit. It is just a bit frustrating how little you can do post op!

However I will say that I am generally not taking more painkillers than I was taking with endometriosis. I had pain every day and then that was ultimately fixed by decapeptyl (though it took almost two months to work and brings its own side effects). So in my head, even if nothing improves, I’m no worse off. But I expect that I will continue to heal and feel better.

Feel free to message me with any questions.

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Hey tinker

I was just wandering if i could

Ask “ do u suffer with pain all

Time or when ur just On your period?”

I have had pain all my life to point i will

Faint on my period and got my lap

Last year and they said NOTHING?

Just had period and i am literally traumatised the pains so severe.

I would b happy to have it all

Out !

Im 44 no children and ive asked so many times and they always said no as i would change my mind, child wise, i knew i wouldnt.

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I used to get chronic pain and heavy blood loss during my period but also pain at any time in between this in my lower abdomen.

I have not had a period for a couple of months as i am on decapeptyl injections again as well as having a Mirena coil fitted which has helped somewhat with the pain but as soon as I stop the injections the pain comes back again!

When I had heavy periods I used to take mefenmic acid which along with co codamol used to help me to survive the heaviest days.

I have had a child and my consultant was reluctant to operate too, however I stick to my guns and said that after 20 years of suffering and many failed treatments that I felt I had given it everything and that enough was enough and I needed my life back as it was affecting my mood! Don’t give up and keep going back and asking it’s your body and only you know how you feel. Good luck xx

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Thanks for answering that.

I am contemplating seeing a gynae privately to try to get a hysterectomy on nhs as i am getting no where quick with gp. Keep having laps and colonoscopy and try this and try that ....Nothing works!

Every month im still in bed( if i can make it to the bed) with hot water on back, ice on pelvic area knocking back anything i can get hands on and still no relief!!

Im 44 now and my mum said the most depressing thing to me other day “ dont worry ur go through change soon” and it was not that it was she then followed it up with “ i did and 50” IT WAS THAT!!! 6 more years of this EVERY MONTH WITHOUT FAIL!!!

Ruining my holidays,my friends weddings, nights away ! U name it and ive had to cancel something coz of it....

It bain of my life id literally rip my own uterus out way i feel lol...

But they just go let try something else...

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I understand fully how you feel, it’s an awful disease that at its worst affects our daily life!

It is your right though to ask to be referred......I would go back to your GP and explain calmly that you would like to be referred as you believe it is your right to do so and explain the reasons why to them.

I really hope that you can get it sorted xx

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Have u ever tried transexamic acid?

Sorry bit random lol

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Yes i have it helped with the blood flow but not the pain so much x

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