Hysterectomy or not?: Hi everyone, I am... - Endometriosis UK

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Hysterectomy or not?

Peoni
Peoni
39 Replies

Hi everyone,

I am under the care of an endo specialist who has diagnosed stage 4 endometriosis, part of my bowel is attached to my uterus.

4 days ago I started prostap the plan was to stay on this for 6 months then have a full hysterectomy with part of my bowel removed.

My consultant offered a couple of different options.

1, do nothing surgical, follow a healthy lifestyle and manage symptoms with laxatives.

2. Take prostap for 6 months followed by a hysterectomy.

I opted for option 2.

I am having second thoughts as he told me that it's not life threatening, he also said that if I leave it, it will get worse, this confused me a little bit. I am 42 yrs old my periods are regular, I only suffer with pains during and mid cycle and occasional bloating the only problem is with my bowel.

I have a list of questions that I will ask him at my next appointment in 2 months time.

Has any one had similar experiences as me and decided not to go ahead with the hysterectomy? Did it become unmanageable?

He mentioned that the average age for the menopause is 51 and going through this would help the endometriosis shrink.

Should I try and hang out until then ? I am trying to work out the pros and cons of a hysterectomy.

Thankyou

39 Replies
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Lindle

Which specialist centre are you at?

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Peoni
Peoni
in reply to Lindle

Why?

That isn't the answer to my question, I am definitely at a specialist centre and I dont know why you have to give everyone a lecture on this!!

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Lindle
Lindle
in reply to Peoni

I am not sure how six words constitutes a lecture but during my 20 plus years of undiagnosed endo when there was no internet and no specialist centres I would have given anything to have a lecture on endo from someone who could help me.

GnRH agonists are not a test for endo and there is no guideline existing that says so and endo does not shrink after menopause. Stage 4 is mostly dense fibrosis anyway. It may become non-progressive in some (but your consultant has said it will only get worse). It will be feeding itself without the need of your ovaries via aromatisation within its own cells and this can and often does continue after menopause. But after a hysterectomy you will still have your ovaries anyway (unless you mean plus a bilateral oophorectomy).

The first thing to want to know after reading your post, if only for others, is to identify what centre is saying all these things.

So sorry for taking the time to reach out and try to help.

7 likes
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angiecxx
angiecxx
in reply to Lindle

Wow, you only asked a simple question !!! You shouldn't apologise for it... i actually feel really sorry for you. Same as you i got diagnosed with endometriosis over 20 years ago and no.one really knew what to do ( even my gynaecologist who i thought might know some sort of treatment to relieve the symptoms i was having. It was just pain relief and basically get on with it. I wish i knew what i do now about endo. I had a full hysterectomy 2 year's ago my uterus was stuck to my bowel because it was embedded with endo, it took five hours to do the op because of the amount of endometriosis that was found. The day after my op my surgeon who was also my specialist told me to expect it to come back and that i will always have problems with my bowels and bladder ( he wasn't wrong ). Endometriosis is a debilitating and incurable condition. 😕😕

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Lindle
Lindle
in reply to angiecxx

I have been an independent researcher in endo for 15 years plus and now run my own guidance and support group for UK women. We have an extensive file section with all the UK guidelines that apply from the NHS, RCOG/BSGE, NICE, GMC etc. We have now helped 100s of women to care, often writing letters for them to take to their doctors detailing their rights. GPs are often very grateful as, for example, few are aware that severe endo is directly commissioned by NHS England and not through local CCGs.

In terms of your situation, we are encountering increasing numbers of women with problems after total hysterectomy, most notably disease from the uterosacral ligaments being stitched into the vault. We have recently compiled a list of expert sonographers and several have had private scans and have had vault endo detected.

I don't know if you are a member, but the link is below if not:

facebook.com/groups/1148144...

x

4 likes
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angiecxx
angiecxx
in reply to Lindle

Thank you but i don't have facebook, but i will have a look later on my son's fb account 😊💛

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Lindle
Lindle
in reply to angiecxx

It would be a shame not to have access as it is an invaluable source of info. That is all I use FB for. It is a private group.

1 like
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angiecxx
angiecxx
in reply to Lindle

I use to have fb but i deactivated it nearly two years ago . But as I said i will go on my son's account and have a look thank you again i appreciate your help 😊x

1 like
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Lauren_97
Lauren_97
in reply to Lindle

This is really helpful I have just requested to follow it. I’m new to having a diagnosis so trying to find out as much info as I can out around it x

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Christin_a

Hello.

The hysterectomy is up to you but does not treat endometriosis, so I'm not sure why your specialist is suggesting it. It can be an option for other conditions such as adenomyosis, and some with endo do choose to have hysterectomys bag on their symptoms such as extremely heavy bleeding etc.

If your symptoms are mainly bowel issues couldthey not just do surgery to release the bowel from being attached to the uterus and remove and endometriosis that they see? Unsticking the two could help your bowel symptoms. And as your unsure about the hysterectomy it could be a good option.

I've not been in the same position as you re considering a hysterectomy so I can't give you any personal experience about choosing.

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Peoni
Peoni
in reply to Christin_a

Thankyou Christina, he told me that my bowel is attached to my uterus so much that it cant be separated, I also have adenomyosis.

I guess I have a lot to think about, I am happy that you said a hysterectomy doesn't get rid of the endometriosis.

I am going to ask him what is the point of going through with it, especially if my only problem is bowel issues.

Thankyou for taking the time in replying to me, its helping me.

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Peoni
Peoni
in reply to Peoni

Also if I go ahead it's a hysterectomy removing my uterus, cervix, fallopian tubes, ovaries and part of my bowel with a small chance of a colostomy

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Christin_a
Christin_a
in reply to Peoni

I've not heard of it being so attached before that it requires a hysterectomy. But if you have adenomyosis a hysterectomy is a cure for that as it's a utrine condition,so by getting rid of the uterus you'll no longer have that condition.

If you have the surgery make sure that they remove any endometriosis along with what they have planned as otherwise it'll still be there and continue to grow.

2 likes
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Lindle
Lindle
in reply to Peoni

I assume the MRI/TUS has shown full thickness infiltration of the bowel as a resection has been decided upon already, prior to surgery, yet the same surgeon has said it is OK just to leave it and live on laxatives. Crikey, I would really like to know which BSGE centre is saying this.

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ChloeV

Hi. I had the same: adenomyosis and stage 4 endo with bowel adhesions. I chose to have a total hysterectomy and excision with open surgery nearly a year ago. Thankfully I did not need a colostomy in the end.

I’m 42 with two kids and no want for more.

The surgery went well and I feel like I have found myself again. The pain had become unmanageable (menstrual and digestive). I had suffered since I was in my teens and only now realise how much of my life was taken away by endo.

I am confident my surgeon excised all he could see and have not had any recurring symptoms since surgery, but there is always a chance of some coming back. However I would have the surgery again for the last 10 months alone. I have enjoyed a sense of peace with my body and time to build up some strength.

Menopause was not that bad, I was probably lucky and well looked after by my doctors, but I also think that endo had so dramatically affected my health that all the menopause symptoms feel very manageable by comparison.

Hysterectomies are always a thorny subject here, but only you will know what you can handle and assess the advice given to you by your doctors. If you want more info feel free to get in touch. Best of luck.

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MajawithaJ
MajawithaJ
in reply to ChloeV

Hi ChloeV & Peoni,

I hope you don’t mind me butting in in here, I’m in a similar position to you Peoni. I’m due to have an appointment at the endo centre to discuss surgery on my bowel & hysterectomy. I’ve been told that it’s a very complicated surgery & that a few different specialists need to be present. I’ve only been diagnosed with severe endometriosis this August via laparoscopy after many years of GPs refusing to refer me to gynaecologist.

At the moment I’m researching less invasive options, I’m trying Utrogestan in hope that it will help with my adenomyosis.

My question is @ChloeV you mention that menopause wasn’t bad.

Does that mean the menopause is over & you don’t take meds for it anymore?

My reluctance to have the surgery is having HRT for a while or for life, I’m not sure?!

I’ve also had a thyroidectomy this year & I’m on Levothyroxine for life.

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ChloeV
ChloeV
in reply to MajawithaJ

Hi. I am on estradiol patches for limited HRT. I am due to continue with this until I reach my 50s. It is the minimum I can do to avoid the heart and bone problems which can arise from premature menopause without risking the growth of endo patches which may have been missed during my excision surgery.

So my menopausal symptoms, if I were to have any more, would cone up when I stop the patches.

The surgery is complex and does need a specialist team. There are a number of places which can offer this, and it is worth doing your research on this to make sure you are comfortable with your choices.

You should also make sure you ask how you will be looked after post-op. I had to have my hormone levels checked and meds changed a couple of times to make sure they were just right. My gyno surgeon did that, but we did it through BUPA. If your GP is going to do it you need to make sure there is someone in your surgery who knows your case and will be there to check things are right for you. After I was discharged from my surgeon, he and my GP had a phone call and letter to confirm my aftercare and possible reasons to be referred back to him if needed.

Hope this rather long ramble helps, but feel free to get in touch if you want more info.

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MajawithaJ
MajawithaJ
in reply to ChloeV

Thanks @ChloeV for your reply. That’s really helpful. I have been doing the research on all the options since August and don’t trust that any of them are right for me-nor is continuing with pain & heavy periods!

So really appreciate reading about your experience. I’m with Aviva at the moment & the operation & post op care would be covered by up to a point.

I’ve had a non existent post op care (NHS) after my thyroidectomy & thought that my thyroid levels would be checked regularly to get the dosage right but that hasn’t been the case which is one of the reasons I’m reluctant to have a hysterectomy.

I will see what they say at the endo centre. Thanks again!

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Peoni
Peoni
in reply to MajawithaJ

Wow this is all just starting to sink in, I knew it was a bad disease but it almost feels like being stuck between a rock and a hard place.

It's hard to figure out what to do for the best.

I have so many questions for my consultant.

I just dont know what to say to anyone on here only that I wish we were not going through this.

Part of me wants a full hysterectomy and then hrt but i dont know enough about how your body changes after a hysterectomy, I know people who have had one and said it's the best thing they have done but then on the other hand I have been told off others that they have incontinence issues as the pelvic floor can weaken but then again does this happen with the menopause anyway?

I'm so confused, I'm just rambling on, my knowledge on all of this is very poor, I need to do some homework.

I'm so happy we can chat on here xx

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ChloeV
ChloeV
in reply to Peoni

Hi again.

This disease is an absolute crap-show for sure.

It affected nearly every aspect of my life, so I was happy to get a bit of it back.

Incontinence hasn’t been an issue as I can at last exercise and am starting to build core and pelvic muscles beyond the constant pain-clenching I was doing before.

The only thing you can do is research, speak to people, make a list of questions to ask your doctor and listen to their opinions but ask for a second one if you are not sure. I found showing them the little st at the start of the appointment and crossing each out as soon as I was clear on the answer. This meant we both knew what was to be answered rather then letting them talk for the whole time and then feeling rushed and confused at the end trying to ask what I needed. It comes off a bit forceful and rude but at this point I didn’t care anymore. I got a lot kore out of each appointment after that!

Otherwise a lot of the other symptoms for menopause: libido, sweats, headaches and dryness were not an issue. A bit restless at night, but that may have been entirely emotional too.

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Peoni

Hi Chloe,

I really do appreciate you sharing your story with me.

It's like a weight has been lifted, part of me does want to go ahead with the surgery as my digestive system is really messed up.

Around 20 yrs ago I was diagnosed with endometriosis this wasnt long after having my first baby.

They removed as much as they could also my appendix.

I went on to have 2 more babies everything seemed ok in regards to endometriosis.

In 2016 I started having bad painful periods, I was seen by a gynae who only did an internal examination and an ultrasound, she told me there was no signs of endo.

I thought it must be my digestive system, I tried all kinds of things gluten free, fodmap, dairy free, nothing seemed to settle it.

I had low iron, bleeding and mucus from my bowel, really bad bloating and a feeling I always needed to empty my bowel, I still sit on the loo for around 2hrs a day.

Feb/March I had a colonoscopy and an endoscopy both tests were clear although on the stool sample it said that my inflammation markers were quite high.

After having the laparoscopy and hystoscopy I finally have answers, I am thinking about raising a complaint with PALS about the 2016 experience with the gynae who fobbed me off, I dont want her just fobbing people off, I'm not sure as I dont know enough about endometriosis but I think if things were looked into a bit more back then, I wouldn't be in this situation now.

You have helped me more than you know in responding, I've not been a member for long x

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girli1969

Hi, we are all such different cases, but sharing my experience in case it helps. My diagnosis was stage 4 deep infiltrating endometriosis and adenomyosis, as well as several fibroids. My endo first came to light when I ruptured an endometrioma. I had ablation surgery and the plan was to remove that ovary (general gynae at this stage). During surgery a very large teratoma/dermoid cyst was found ‘engulfing my OTHER ovary, so that was removed instead, and original cyst was drained. (How this was missed in scams I don’t know ☹️). Original cyst regrew on left ovary and symptoms got worse, had prostap treatments twice, before referral to specialised endo centre. I THOUGHT they would want to do a hysterectomy, I was 48, so baby making complete, but surgeon was very keen NOT to do a hysterectomy, and wanted to try and preserve my remaining ovary too. I had over 5 hours in surgery of excision, and the surgeon was extremely apologetic that she had had to remove my second ovary. I was told that my uterus and bowel were fused together, but that as much endo as possible was removed without risking perforation. At this point the surgeon thought I might need further surgery, using several surgical teams, gynae and bowel specialists together, possibly needing a temporary colostomy as she thought my endo could be within my bowel. Anyway, sorry for lengthy story, but I have NOT required further surgery. I am on HRT, and I have literally had NO endo or bowel difficulties since my second ovary was removed over 2 years ago now. I think I’ve been lucky as a friend who had radical hysterectomy has continued to have cyclical endo pain - all very odd! My conclusion is therefore that I don’t think a hysterectomy is necessarily a cure-all AND there could be the possibility of a reduction in pain with further specialised excision surgery. My first gynae surgical experience was quite a traumatic experience but the second, under specialist care, was a whole different story. Best wishes, whatever you decide.

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Imo82

I am having surgery next week. MRI shows attachment of uterus to bowel in several places. Evidence of fibrotic DIE as well as active endo (conclusion of MRI). I'm having my surgery with a colorectal surgeon who will complete the bowel area of excision. He said that it was useful to know that I had completed my family as if as the MRI suggests the uterus is severely attached to the bowel it would be hos priority to preserve healthy bowel and in some case it may give him easier view and better access to do this once the uterus is removed. I have been advised of all the options and marked up for a stoma and they will do what is required to give me the best possible result. I have signs of adeno and 2 previous csection with a large scar defect so that may serve to help their decision is adeno is evident in the op.

I wish you well. These are all personal choices so try to be at peace with your decision whichever way you go.

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LMel

Similar story to you but had mirena and not prostrap. Symptoms managed quite well until a year ago when I had sudden rectal bleed and then after tests it was decided my bowel was fused to uterus and causing the pain and bowel pain issues.

I have literally had my full hysterectomy and bowel shave on last Monday - so far I feel better than any of the other 3 laparoscopies I’ve had for endo 🤞🏼(One was emergency for appendix) was prepped for stoma in case damage to bowel was too great but luckily did not have one. I had 2 gynaes and one colorectal surgeon in with me and surgery took 4 hours.

I would say I was reluctant to have the surgery but knew I couldn’t carry on like I was (daily bowel pain, limited food options, day to day living for last year)

Very happy I’ve had it done and feeling hopeful for a better quality of life.

Xx

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StefaniaJW

NOPE. Neither option is ideal.

Unless you have adenomyosis, a hysterectomy won't just be pointless but actually counterproductive because removing the uterus or even the ovaries won't stop endo from growing at all.

If you suffer from stage 4 endometriosis you need surgical treatment and not drugs, so not even the first option is ideal.

What you need is to get rid of all endometriosis and separate the uterus from the bowel.

The only known effective way to do that is through advanced EXCISION (not ablation) surgery. I can provide you with a list of extremely skilled excision surgeons who will excise all endometriosis from its roots and whose recurrence rates will be less than 8%.

If you truly want this to be managed in the RIGHT way, with a team of QUALITY surgical professionals, PM me and I'll be more than happy to provide this list.

DO NOT SETTLE FOR AVERAGE, SUPERFICIAL opinions. Only trust experienced endometriosis excision surgeons

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Angie245

Hi I had a hysterectomy at 27. I already had 3 children. I suffered with pains and scarring to my bladder, bowels, back and womb.

I did suffer every month with heavy bleeding and I’d suffer with anxiety whenever it got close to my period because I knew because of the bleeding and pain I’d be struggling for 7 days. I basically had no life around those 7 days and work was understanding but hard when you have to leave the room every 30 minutes!

It took me 5 years to get them to agree to do it from having my daughter at 22. Best thing I ever did. I have my life back! I think deep down you know what is best. If you can manage and it’s isn’t effecting your quality of life then don’t have the op. I still ended up having another op in 2017 to remove adhesions scarring which had then restricted my bowels. I still get problems with them but nothing to the extent I did before.

I’m not sure if that helps but good luck. xxx

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Joeyjay

Hi there, I have stage 4 and the bowel problems were really bad daily for months if not years!! I had prostap for 6 months, I then went onto Provera and opted for a meat free diet (not easy if you love meat like me) and have been doing fine for over 18 months with the odd flare up that’s only lasted a couple of hours. I could have had a hysterectomy also and at aged 45 at the time (now 47) I could have opted for that given the fact I have two children and wasn’t having any more. I chose not to and am trying to hot foot it to the menopause where endo is meant to shrink and no longer become a problem. It has definitely been the best option for me and to be honest I’d had enough of surgery trying to remove endo and cysts etc. Good luck with whatever decision you go with xx

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Peoni

Lindle I have sent you a private message with an apology.

Thankyou every one for sharing your stories with me, I wouldn't wish this disease on anyone but I feel less alone knowing I'm not the only person that is suffering.

Another thing that frustrates me with all of my digestive tests is the CT and MRI

I had a few months back, the CT showed that I had pelvic congestion and possible fibroids.

The MRI showed nothing but my right ovary was alot lower than my left.

No mention of my pouch of Douglas, bowel and uterus being stuck together.

After the laparoscopy and hystoscopy my consultant said he couldn't understand why it wasnt picked up on the MRI and was going to look into it.

I felt like I was going crazy with all of my bowel troubles when the reports of the CT and MRI didnt show anything much.

I'm also upset and confused about him saying we could just do nothing and manage it with exercise, diet and laxatives and then saying in the next breath that it will just get worse in time.

I struggle enough with bowel issues and passing urine around 15 times a day, I have this feeling of deep pressure in my bowel and bladder all of the time.

Sorry to have a winge and moan, I do appreciate your stories as it helps me to understand this disease a little bit as I have never took the time xx

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Peoni

I'm not sure if this is related but around 5 years ago I started to get brown/grey patches on my face, I was seen by a dermatologist who said it was melasma, similar to what some pregnant ladies get.

I have had numerous lotions and positions over the years but nothing has worked.

I dont sit in the sun or sun bathe, I wear sun protection under my foundation.

I am curious to hear if any one else has had this problem?

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Northernmonkee1

Hi,

My situation is slightly different I have stage 4 and my consultant wouldn't operate as my bowel involved. I have had the GNRH antagonists and then just stopped it all. I am 46 so older than you and now the jabs have tipped me into the menopause. I have chatted with a few women who have had a recurrence of endo after surgery and I was worried about bowel probs post-op. I have been going to see an endo specialist in an endo reg center. They are really hard decisions. My bowel is attached and it's a mess down there. I considered getting a second opinion about surgery. Sounds like you have lots of questions and need to ask consultant my endo nurse was really helpful.

Take care x

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Northernmonkee1

HI, I have had the skin changes too but couldn't get access to a dermatologist. Thanks for mentioning it x

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Peoni

Thankyou for sharing your story, its heartbreaking so many of us are suffering.

It's the not knowing what to do for the best.

Although my consultant is really nice, has good manners, draws diagrams and explains things clearly I still dont have a clue.

I saw him 2 weeks ago, he wants to see me again in 2 months, I'm guessing this is to see how I'm getting on with prostap.

What if I do go ahead with the hysterectomy? I'm worried that my bowl will still play up also what if I end up in a worse situation than I'm in now.

It's just what IFs all of the time.

I will be taking a notepad with me next time, I have so many questions.

I was thinking to myself, well if I can just get on with it, bury my head in the sand and get through the menopause then it will all go away and settle.

Wishful thinking hey.

One good thing is I started the prostap last tuesday, I know it's only early days but the only change I have had is sore muscles and joints and a mad outburst of tears last Thursday night.

Please let me know how you get on and if you do decide to go ahead with the hysterectomy.

Xx

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Cosford

Hi

I had the same Endo as you with my bowel and uterus sandwiched together, my consultant at the time wanted to remove the Endo and part of the bowel and give me a colostomy bag which I didn't want, luckily I found a specialist in Leeds called Mr Trehan and he performed the op which took 6 hours and shaved the Endo off the bowel and I also had chocolate cysts removed and my ovaries suspended. My advice is look online as not all specialists want to butcher women and an hysterectomy should be your last option.

I'm still not brilliant and have pain because I have adenomyosis but I'm still in one piece thanks to Mr Trehan.

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Peoni

Thankyou Cosford, it's nice to hear different stories.

The more I'm learning about it, the more I am realizing what a horrible disease it is.

I'm worried that my daughters develop it.

The only thing I am thankful for is that it's not the dreaded C word x

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MissPanda

I have been diagnosed with endometriosis but I am in my 20’s so I can’t personally help you. But I have a friend that has endometriosis but they caught in her 30’s it was so severe that the doctor opted for a hysterectomy, she assumed that that was the only option. As of right now she’s had her hysterectomy for about a year and a half and she told me never go for a hysterectomy, it does not “cure” endometriosis and you can still have growth much less but it will still be there. She is experiencing menapause and has struggled with hormone imbalances that make the menapause symptoms worse. So I suppose you can say it has its own set of trials and tribulations that you should consider.

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Peoni

Hi MissPanda

Sorry to hear that you have endometriosis so young.

That's sad news about your friend, I hope things get better for her soon. It's a horrid disease.

Thankyou for your post, i always thought that having a full hysterectomy would get rid of it all, speaking to you lovely lot on here has made me realise that's not the case.

It makes me sad, it's like we are stuck with it for life.

I was diagnosed with it in my 20s, I never took the time to learn about it, I'm wishing I did now.

Take care MissPanda xx

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