Poor you, how disappointing that you couldn't get it sorted on that admission. I've still got my bits but am having same dilemma. Only you can judge your quality of life. The thing that concerns me is to go through that & it may as far as I understand not resolve the symptoms. So it may be a case of better stick with what you know. It's all a big gamble I am waiting to ask my consultant on the odds of improvement & if it will fix the bleeding or if menopause will cease the bleeding & pain I'm a bit older than you 48 so probably have age on my side but if the bleeding and associated pain is not going to settle I'm thinking in favour of hysterectomy. I will be interested to follow your comments - good luck x

I was diagnosed with stage 4 endo,adhesion around bowels, chocolate cyst on both ovaries,7 cm in size in both ovaries, horrible pain,bloating and more in 2012.They tried to remove my cysts,but they have completely filled my ovaries and I Have adhesions all around my bowels .It was too dangerous,to remove it all and also with the prospect of having a stoma long term.Only option was to have a hysterectomy.I decided not to have hysterectomy.I am in pain,bloated and have issues with bowels,I suffer from fatigue and pain all over my body ranging from hips,to ankles,now in my right arm.I have a course of zoladex injection for 3 months to stop period and pain.It all returned after zoladex effect worn out.My chocolate cysts are still there.I work as a nurse full time.I am not sure I have made the right decision in not having hysterectomy,but I do think is so extreme.I wish the medical profession would research and study more endometriosis.It is physically and emotionally destructive.My body is just not the same anymore.I don't believe having hysterectomy would solve all my issues.

Apologies for long reply.

I wish you all the best in your decision,whatever it might be.

Endo sister

I had total laparascopic hysterectomy 4 months ago...along with resection of rectovaginal nodules/bowel adhesions and removal of visible endometriosis (stage 4) at special BGSE centre...pleased to say doing well...back at work...taking no pain killers anymore...message me if you have any queties

I had total hysterectomy and removal of ovaries in December at age 37, I am now on hrt patches. personally it was the best decision I have made, no more pain or fatigue, quality of life so much better and relationship with husband and children greatly improved!!!!!! I had it done laparoscopically in day surgery, felt great after 2 weeks but definitely had to take it easy or your body would tell you! Went back to work at 10 weeks. I wish you luck with whatever decision you make x

Hi. I'm have the same dilemma at the moment. I'm almost 40. Basically been through the same as yourself. Laparoscopy last November. As much endo and adhesions removed as possible. Consultant fitted a marina coil which basically sent me crazy. He has now recommended full hysterectomy of womb and ovaries but I'm so anxious I don't know what's best xx

Ive just had a hysterectomy and I'm 40. It comes after years of pain, bleeding and failed ivf. I simply couldn't take it anymore and it was impacting on our life so much.

Before I go any further, this is not scaremongering, but highlights that the risks are very real

It was meant to be the start of our new life but things didn't work out. Like all of us, I signed the consent form and was aware of the risks, but never thought they'd become reality. My surgery was 7 hours due to the severity of the endo and adhesions, all done laparoscopically. I was told there was a 1 in 3500 risk of a perforated bowel.

Five days later I was rushed in by ambulance. Finally tests showed I had sepsis, my organs were shutting down and I was grey

I had a ct scan which confirmed a perforated bowel this was at the site where endo had been removed from my bowel but my surgeon would not have known this at the time

I had emergency surgery, spent days in itu, then two weeks in the ward over Xmas and new year. This surgery created a stoma and also left me incontinent. Without the stoma I wouldn't be here. I could go on, as I'm nOw worse off that before and left questioning if the hysterectomy was the right thing to do

My hair has fallen out, they say a combination of hormone changes and the sheer stress my body has been through

In reality, I couldn't have carried on as I was, but I've now got a new set of issues to deal with.

If it's the best option for you, have the op but only if it really is the last resort. My case is rare and was because the endo has caused havoc inside !

Good luck with whatever you decide x

I had full hysterectomy and ovaries out at 42 and had it done via incision and general gynae. Whilst obviously periods stopped he didn't take endo so I was in worse pain. After two years I finally got treatment in bsge clinic for endo and the adhesions caused by surgery and scar tissue. My bowel had stuck to my pelvic wall and my appendix was stuck too so that was removed

I finally feel like I can get on with my life and am out of pain.

I'm in hrt - Kliovance - prescribed by endo specialist and she also heads up menopause clinic.

It's a tough choice but even with all I've been through I'm glad I had the hysterectomy.

Check out hysterectomy associations website as lots of useful info.

Hi,

I had a full hysterectomy at 35. I was diagnosed with stage 4 endo in 2013, after the initial diagnosis, of a laparoscopy and removal of a 16cm cyst from my right ovary, I had to go back and have a further laparoscopy on my left ovary, which they ended up cutting me open and removing it as it was so badly damaged. 6 months later I was back in A&E with horrendous period pain and was told that I had another 8cm cyst on the right ovary. I went back to see a different consultant and he asked me how I would feel about a total hysterectomy. My response was - get it done. I went on gnrh injections whilst on the waiting list for the operation and it was the best 6 months of my life. They ended up cutting me open and doing the hysterectomy and operating on my bowel as well, I was pretty messed up in there due to the endo!

The last 2 and 1/2 years have been the best years of my life (since starting my periods aged 15). I've been on loads of holidays, I've been swimming, when someone asks me if I want to do it I say yes immediately, my energy levels are up, I've up at 5.30am every morning and go running, I've recently lost 1 1/2 stone - I am loving life. It was the best decision I ever made. I cannot believe how my periods ran my life, I used to spend days in bed in agony, I'd only wear black trousers, I couldn't plan doing anything or going anywhere in case I was tired or on my period, so I was constantly letting people down - looking back it was pretty horrendous.

I am on hrt, but one with a very low dose of oestrogen in it.

Reading the comments, I know not everyone has the same response, as we are all different. You have to make the decision based on your own experience and what you want, also be aware that a hysterectomy doesn't cure endo. I'm glad I made that decision, I don't have children, but with the state of my ovaries, I wouldn't have been able to naturally conceive, my quality of life is so much better and my outlook is positive.

Hope this helps - sorry it's so long.

H xx

Hi, after having a failed op with my local gynae for my stage 4 severe recto-vaginal endo (organs fused together,ovaries stuck, heavy bleeding, constant pain etc) where they used ablation instead of excision to "remove" the endo & adhesions, I was told my options were to have a hysterectomy or have a coil & have repeat surgeries every few years. Not much of a choice!

I accept hysterectomy is often a good option if there are other issues like adenomyosis but if you have endo in areas other than your uterus, it won't treat that. I'm mid-40s & my bowel & bladder symptoms & heavy bleeding just kept getting worse.

I researched more about specialist excision surgery & decided not to be referred to a local BSGE centre as the expertise needed was not there. I found two excision experts in Manchester & Birmingham - this board doesn't allow you to name Drs or hospitals - and went for treatment in Manchester on NHS. Had surgery in November which included bowel resection. It's taken a while to recover but from the moment I woke up I knew the pain was gone. 5 months later & I'm pain-free and so much better.

If you can, maybe try getting a second opinion, although there may be reasons why a hysterectomy is a good option, but I found BSGE & local gynaes pursue hysterectomies because there are so few surgeons in this country skilled in expert excision.

Wishing you good luck on becoming pain-free soon.

I'm sorry you're in so much pain, I know how much it sucks.

I'm 43 and had a full hysterectomy, and removal of both ovaries, 5 weeks ago.

Before the procedure I was in constant pain and constant pain medication! I felt drained and groggy, suffered from dibillitating migraines and mood swings, all side effects from the meds I was on.

Two specialists advised the hysterectomy as endo was so widespread that it was covering everything and it would have been too difficult and dangerous to try and excise it all.

I too was worried, having read a lot of horror stories about hysterectomies online but once I started talking to people about it, in real life, I found about 8 people I knew, who had also had one done and, to a person, they all said it was the best thing they could have done and it had given them their lives back!

Turns out it was doubly great for me as my stepmom advised me, when I told her I was having the op, that my biological mother had also had one done, as she'd been diagnosed with one of the female cancers, she wasn't sure which one, so there's a good possibility that I dodged a bullet in that regard.

3 1/2 weeks after the op, I was very worried that the pain was back, as bad as before and that I was having crazy hot flushes. Turns out that I'd developed a bladder infection and had a raging fever! I was so worried that the surgery hadn't worked, as I knew there was a chance of this going in.

I'm now on my 2nd lot of antibiotics (first type didn't work) and, now that the post op pain and the bladder infection pain has mostly gone, it feels so much better! The pain is a pretty much gone (I suspect it will be completely gone by the time I finish my antibiotics) and I'm off pretty much all the meds I was on, so no longer feel like a zombie with mood swings 😏

I've still got a way to go, in regards to recovery, and it still feels odd to think that I can't have any more children... not that I probably would have but options and all that, but with the reduced pain and no chances of a lot of the hidden female cancers, I feel I've made the right decision to have the hysterectomy and excision!

Sorry for the long reply, I just thought it best to give you as much information as possible, as I know only too well the worries and thoughts which must be going through your mind right now.

I had this surgery 4 weeks ago - a total hysterectomy (uterus and cervix) plus a BSO (tubes and ovaries) plus excision of all endometriosis. I am 39. I've had a rough few weeks and have had some post op complications but despite all that I'm already better than I was pre surgery and taking far fewer painkillers. I am not on HRT yet (consultant wants me to wait 3 months) so having hot flushes but other than that, I'm doing OK. I had adenomyosis, hydrosalpinx in the right tube, cysts on both ovaries, a large rectovaginal lesion causing obliterated POD and more lesions round my left ureter, right uterosacral ligament and on my bladder. Excision alone was not appropriate because of the adenomyosis. I had reached a point where my entire life revolved around painkillers and laxatives and fear.

It was carried out at the largest BSGE centre in London (please message me if you want specifics).

Hi Sarah, I am 39 and had a full hysterectomy this January. After suffering for years with endometriosis.

I have been lucky enough to have two beautiful children which made the choice easier.

I am still recovering fully but in the long run it should be for the best.

All you can do is write down the pros and cons and speak with your loved ones.

I have a few friends and family members who have had a hysterectomy and they all say it's the best thing they ever had done.

If you want a private chat please feel free to inbox me, but please remember everyone's experience is different.

Best wishes

Tinkerjack

Hi Sarah,

I had a hysterectomy last year 2016, aged 40. It was a very hard decision as all I had ever wanted was to be a mum, but sadly it wasn't meant to be, but that said the operation has given me my life back!

I used to bleed continuously 24/7, have severe pain and fatigue, I was anaemic and depressed. I had lost all of my "friends" as I would keep cancelling plans as I just was not well enough to go out and was so depressed I never wanted too! I would have to sleep in the afternoons so could never go out for a whole day as I was just utterly mentally and physically drained all the time!.. my husband and I could never make love because of the bleeding and if we ever did the pain was horrendous!

Since the operation I no longer have fatigue or pain and bleeding!!... there is no pain when my husband and I make love and I am now able to have days out without having to sleep in the afternoons!.... for me this operation has given me back my life and the old "Kelly" (who used to be happy and bubbly is starting to come back!).

It is a massive decision, but if you would like to talk further please pm me, I am happy to tell you anything and everything I can if it helps!..

Good luck lovely

Kelly xxx

Hi there I'm 43 had trouble and multiple surgeries since I was about 28. Periods never an issue but I began to get this constant pain in my side 2 years later after multiple visits to gp they diagnosed a dermoid cyst on my right ovary. And a bit of endometriosis on that side. I thought ok all well and good this is the end of it. I had 6 months of zolodex but after it stopped it came back . I had to go private and get a laparoscopy privately to diagnose it due to pressure and disbelief from my work. I had treatment from what is considered the best doctor in this field which shows just how persistent this bigger of a disease is. It came back I had various laps courses of zolodex ( gonadotropin agonists) which helped a bit . Sadly I was given the ultimatum that they weren't prepared to pay for the zolodex but I could have a hysterectomy. All I would say is have your ovaries removed otherwise it's pointless. And go to a bsge centre . I had little to no pain after . I had a laparoscopic vaginal hysterectomy. The big big problems I had was with pain in my bowels. I suffered months nothing would help, I saw a certain expert after several visits to gp, surgeon etc and he suggest ed lactulose stool softener 2/3 times a day . Worked like a dream . The codeine, morphine tramadol just hardened the stools and caused the pain and pressure. I'm glad I did it sex life ok on hrt tibolone so all of in all now I'd say it was a good move. Tiny scars inside vagina feels Normal to the un trained eye nothing weird. I can still orgasmxx the same . I never had kids but never really desired them that much . Good luck it aint that bad contact me anytime if you wish hugs 🤗

No problem appreciate it's a big choice I wish you the best recovery and respect whatever decision you make xx

Hi, I had a total hysterectomy last year at 34 years old which marked my 10th gyni surgery. I have had a few complications which has meant for a longer recovery than I had hoped, but even with these I feel better than I ever did before the surgery. I had a few months after my surgery when I felt the best I have ever done and I am hoping that once I get over this most recent hurdle, I will get back to that feeling. For me it has given me a far better quality of life and I really hope you get the same result too. Sending lots of love and good luck xxx

Hi Sarah,

Thank you for asking such a good question. I'm due to have TAHBSO and excision of endo in a couple of weeks, and the wonderful replies I have read here (both positive and negative experiences) have really helped me. I'd been wondering about orgasms, for example. I'd also been wondering about life with a stoma (a possibility for me).

Huge thanks to everyone who has replied, it really helps to put things in context when you get such a wide range of personal experiences.

X x

I had similar issues, couldn't get things resolved by 2 hospital stays/procedures and I had a total hysterectomy at 42. I am now 44. The amount the surgery helped my pain/anemia/bleeding/etc was amazing. I, almost instantly, felt sooo much better.

HOWEVER, I was not prepared for the change my body is going through. I really was not expecting, nor was it ever explained to me, that this msg would drastically change overnight. For one thing, my weight is the same but none of my clothes fit. My muscle is turning to fat and I have not changed any of my eating/exercise habits. My sex drive is almost nonexistent. My moods have taken a dive. I don't feel motivated very much at all... & not sure what to do about it.

HOWEVER again, the pain & body trouble I went through is gone and that is truly amazing.

I am sure if it was before my surgery again, I would tell you that I would do it again in a heart beat. Of course now that I no longer suffering like I used to & I am d along with the other.. it's hard for me to say that I would be so quick to do it. Not much help, I know. But perhaps you can get more info regarding these things before the surgery from your doctor. Good luck! I mean that truly. ❤

I just wanted to say thank you for posting this question as I've found the responses so helpful. I am going through a similar dilemma but the other women in my life don't have endo and just don't understand so are very against the idea. I'm only 30 and everyone seems to think it'll be the end of my youth but the reality of my life right now I'm like "what youth?!" I swallow painkillers by the fistful daily and have had 5 lots of pelvic surgery in as many years. I have two young daughters who are 1 and 4 and so full of energy and life and I can never do the things I want to with them because living hurts so much. They spend so much time cooped up inside because I haven't got the energy/strength to take them to the park. It's all I can do to make it through work every day and I'm useless by evening. I'm not really living my life. Plus I had a uterine rupture when littlest was born so I can't ever use the bloody thing again anyway! Just so terrified that I'll end up worse off as I have endo all over so consultant has said that hysterectomy is unlikely to be a 'cure' for me unless I do it with no HRT for a year.

Hi I have really appreciated all these responses as well, pros & cons to both but it would be lovely to be able to wear white underwear and not run my life around not being dosed up I got my appointment through for consultant so might have more informed questions for him. Thanks for Sarah posting the question and everyone who contributed responses x

Hi Sarahjhill,

I'm sorry to hear your suffering.

I had stage 4 endo which blocked my bowel and strangulated by ureter which was diagnosed when I was 23 after suffering since starting my periods age 11. Following all the usual hormonal treatments and 2 laparoscopies I had a major laperoscopy that removed the endo from my bowel, ureter etc. This helped greatly but my pain continued. After 2 more laps I had an MRI scan which diagnosed wise spread adenomyosis. At this point I had to make the hardest decision of my life I was in desperate pain which was not resolved through pain relief or hormone treatment and surgery was not an option due to the widespread nature of the adenomyosis so at age 26 with no children (which I desperately wanted) I had a total hysterectomy.

For me this has been the best desision. I still get upset that I have no children but I have had 10 years being period free 😀 And pain free with the exception of some bowel pain up until a year ago.

My current situation is that I have increasingly bad pelvic pain and am having a diagnostic lap in 2 weeks to check for scar tissue or endo. Fingers crossed it is scare tissue which is easily resolved, worse case it is the endo back and I come off my magic HRT or it is nueropathic pain then it's off to the pain management clinic.

Everyone's situation is different and the choice is so hard. But even with my current situation I still do not regret my hysterectomy, I have had 10 years of near normality which has allowed me to get on with my life and enjoy it.

Good luck with your decision and treatment.

Just a quick message but get in touch if you wanna talk further. I'm 45 due a hysterectomy in August and last week had the hormone blocker injection- the 3 month one- so I'm straight into menopause. The consultant said that the blocker will give us an idea as to whether the pain, bleeding, pressure, back ache I have is due to the ovaries or not, essentially trying the post hysterectomy situation before committing to it. Up to now I've a lot of more general aches and pains, but the pelvic pain and pressure has stopped overnight, so I'm sure that I'll be better post hysterectomy. Maybe something you could consider? hope you feeling better soon. x

I am 34 and having a full abdominal hysterectomy on Monday due to this nasty illness x