Endo post hysterectomy or ovaries removal

[Helen_justtired]

Hello all. I'm new to the forum but a sufferer for oh so many years now. My question is this. Even though each case is as unique as it can be, has anyone here had a hysterectomy or removed ovaries and tubes to tell me of their post op adventures? Was the endo eliminated?

[CJR99]

Hi Helen,

A great question to ask and I do hope I can assist with your question. I'm a year post op...total hyster with ovaries removed. I'm 46 and have suffered with Endometriosis for years. It was finally diagnosed in 2017!!

At the time I was really suffering, as many of us do with very heavy bleeding, recurrent miscarriage, serious bowel issues and crippling back pain.

My pathology showed Endometrias in both ovaries, fibroids and Endo in other areas, pelvic wall etc. What a mess! I was fast tracked in 4 weeks from ulta-sound to surgery for a suspicious cyst which had a good change of being malignant.

One year later and for the last few months I've been having very bad pelvic pain, back pain and shooting pains down legs...I'm being investigated for a return of the beloved Endo or potential remaining ovarian tissue. I also look preggas...is there any need?!!

My gynaecologist sent me for an MRI and I'm getting the results next week.

I chose not to take HRT as could only have a small amount. The last year(Surgical Menopause) has been like being stuck in an elevator with Donald Trump...pure hell and I'm a very bubbly/positive person!!

I was operated on robotically by top surgeons including a Gynae/Oncologist however, I think excision is really tough for even the best.

When I returned for a six month check up I explained my pain issues and was worried Endo had returned. I was told it was impossible due to having no ovaries.

My new Gynae assures me it can return...

Genuinely I think I've just been unlucky. I'm naturally hoping it's Endo and nothing more sinister.

If there any lovely ladies considering a Hyster I wouldn't wish to put people off. Please do your research,ask a hundred questions if necessary. There are many positive stories of this procedure offering significant relief.

On a positive note it's amazing not to have all of the heavy bleeding. However, I sometimes wish I could go back in time and do things differently but, sadly I just didn't have a choice.

Do hope the above is helpful. Please feel free to ask any questions...I love to help people!

Best wishes,Clare x

[HellyLlewelly in reply to CJR99]

CJR99 I have just posted today about the possible return of Endometriosis...cells leftover multiplying etc.

Im 7 months post Op and in agony. Had TAH, BS so its all gone including cervix, I didnt want to risk any left over lady bits for it to attack again.

Ive been put on Combined HRT Im 39 and mother of a toddler.

Im having constant dull back pain and even feeling period type cramp and ovulation imprint pain bang on the dstes I would have been due on.

I had extensive endometriosis attaching ovaries to pelvic wall and a big bowel shave of Endometriosis.

I coukd feel my bowel pushing out stool like a dropping down through all the tunnels and then out a few days ago plus with increased wind (deafening stuff ) and gassy stooling (this was never me)

Pain passing feaces.

My bladder is 100% happy though its moved in where the womb moved out so feeling a great relief that way for more space.

Less frequent urination etc.

My Dr has mentioned tests for me, some markers that could indicate possibility of Fibromyalgia.

7 months on and Im thoroughly down. I thought this would be the end to my woes.

Im not gonna lie, Ive felt like putting an end to my life, if only fleeting, I cant stand this pain much longer.

Gabapentin and Amnitriptaline have not worked for me and my Dr wouldnt prescribe Lyrica due to its badd press and highly addictive nature (one half of the popular TV due this is supposed to be what he was in rehab for.)

I dunno what to do or where to go.

Can this endometriosis not go ahead and bugger off?

My understanding is that Im on the progesterome portion to starve off the endometrial cells and regrowth? The consultant/surgeon imparted this on me as I was leaving hosoital.

Ive paid private for my op and Ive been left with no help, no advice, no follow up post my 6 week check up which was included...

Im referred to HRT clinic via NHS but all this waiting is just horrendous and in the meantime Im drinking on painkillers to get relief from pain. Just to function, manage the house and look after my child at night who has severe disabilities.

Im 40 soon amd its such an anti climax I feel Ive lost the energetic enthusiastic person I was.

My exercise regime of thr past is not possible and phisio exercises to build up my core and stretch mechanical stiffness do not seem to be helping me with the back pain which is a searing burning gnawing one point "ache" that never subsides.

I also look nothing like myself with 2.5 stone on and a heavily swolen abdomen.

Any scans are at an 18/24 month waiting list here unless its cancer.

All routine operations are canx here unless its cancer or trauma.

I live in Belfast. The NHS trouble is the worst in the U.K here. Crisis infact.

Im really in Limbo Land and Im really down.

Do you believe in your heart your endo has returned?

From around 2012 I was a healthish eater but frequent exerciser and in great shape yet my body was being invaded by this stuff bringing me to a no exercise state by about June 2017. Weight has piled onto me since then.

Im comming 40 and this is not where I wanted to be, not at all.

Regards

Helly.

[CJR99 in reply to HellyLlewelly]

Hi Helly,

So very sorry to read this..my heart goes out to you.

Will reply more in next day or so if that’s okay as I’m out of the country until Tuesday.

Take care Clare xx

[HellyLlewelly in reply to CJR99]

My dear friend,

Im almost in tears reading our year old posts.

I cant believe Im still at this point 19 months post Hysterectomy and pain is my daily nemesis.

More private treatment coming by the looks of it.

Im 40 now.

Life didnt begin, infact it feels like a slow end....

Love

Helly x

[healthyself]

Hi, Helen.

I’m new too. Just joined today and your message is the first thing I’ve seen so far. But I’m just gonna dive right in.

Is your question essentially “Will a hysterectomy with bilateral salpingo-oophorectomies (removal of uterus and both tubes and ovaries) cure my endometriosis?”

If so, the tragically unfortunate answer is no.

CJR99 wrote, (ugghhh, I can’t cut and paste from her message so I’ll paraphrase) ~ At 6 mon check up, explained her pain issues, worried that the endo had returned, and was told “it was impossible due to having no ovaries.”

So this is probably well known to you, but just in case...endometriosis is endometrial tissue (the inside layer of the uterus; what normally proliferates, or grows, each month and is sloughed off and expelled through the vagina => menstruation = period) not where it should be, or outside the uterus. Now, normal endometrium responds to hormonal commands. But the errant endometrial tissue outside the inside of the uterus- wherever it may be - also responds to those same hormonal commands. So those spots of tissue also grow, and also slough ...but with no love canal to expel thru. Thus beginning a usually worsening spiral of problems as the sloughed off material is irritating to the surrounding tissues, bringing in multiple defensive chemical and immune agents, etc,; causing scarring around the endometrial tissue which if it even partially becomes encapsulated then you have a bit of tissue that still grows each month in a much smaller area to do so, etc. etc.

So, while it makes sense that if endometrial implants respond to hormonal commands - and those commanders are taken out - then the implants would become inactive.

Of course, this very logical reasoning does beg the question a bit of why the uterus would need to be removed at all, even if there were significant implants on the outside of it.

Uggh, ok, so between my pain meds kicking in and my pain kicking up, I’m getting wordy and off track now.

The horrifying fact I wanted to share was this - it has been discovered in laboratory studies that an endo implant can become capable of producing its own estrogen. Yes, it is a veritable horror movie like plot twist. I mean, come on!!! Those lifeless robots shouldn’t be suddenly able to make their own command center?!

Ok....so, I hope that helped explain a bit.

There are other reasons and mechanisms by which one may still have pelvic pain after a hysterectomy, but I think I’m gonna cut myself off here for now, at least until I can focus a bit better.

Best wishes and chin up,

Healthyself

[HellyLlewelly in reply to healthyself]

Oh my Gosh IM SO SORRY I MISSED THIS

- probably lost in my own self pity and pain...

The explainations you put on here were really informative.

Really well explained.

Nancys Nook is where I found my next BSGE Migs certified Endo Surgeon, unfortunately Im paying private again but what is the price on potentially getting ones life back?

I must try again.

Best Wishes

X

[NH88]

As you have so rightly said each case s unique. Contributing factors as well as family histoy plays a tal role in individuals decisions.

I am nearly 1 and half years post total hysterectomy and oopherectomy. I had it done by a specialist in endometriosis.

I have been on estrogen only hrt although wasnt given it straight after surgery, but about 1 month and half after (starving any endo of estrogen and killing off possible bits left...although my surgeon was confident he had it all.)

I am the best i have ever been. I now have a quality o life i never had before.

For me it was the best decision I ever made. I had it done at the age of just turned 28.

But as quoted...personal individual circumstances dictate certain proceedures and their success.

I am willing to talk to you about it, but i must highlight i am not medically trained and can only offer my own experiences on this matter.

You should always seek information from a reliable source and speak to a professional.

This proceedure as everyone knows is non reversible. It maynot work for everyone.

Head up and keep strong.

X

[Hidden in reply to NH88]

Hi

It's true everyone is different, but so pleased to hear that hysterectomy has worked for you. I have just had hysterectomy 5 weeks ago and had a few complications which set me back a bit but I will bet this as today I am feeling great and still have a ling way to go with recovery. But reading your message has made me feel more positive that I have done the right thing.

Xxxx

[Helen_justtired in reply to Hidden]

It is a very hard decision for most of us I would say. Especially when you do not have kids. I am also hopeful and confident that next week after my surgery, I will finally be better. Best of luck to us all ❤️

[Hidden in reply to Helen_justtired]

Hi

Do what they tell you to do after the operations and rest hun. Make sure you have friends and family that will help you as you will need it. Wishing you all the best with the operation and hope it works for you xxx

[NH88 in reply to Hidden]

I also had a bit of a set back in the 1st stages that frightened the life outa me.

I bled...and when i mean bled i mean filled a pad. Ad a toilet bowl and with clot like parts. I had to go to hospital a+e.

It turned out that the pool of blood that collects at the stitch site after...once all organd move into the space that it given after womb removal, had leaked through the stitches in 1 big swoop. My consultant told me although it was an unpleasant experience if they had seen me at my next appointment and scanned and sen all the blood then i would have had to have gone back under and they would have had to drain it.

Even with that experience...i dont regret what i decided. My life it better now than it ever has been.

If you ever want to talk just send me a message.

Keep strong...you have done the hardest part already and you arent alone. 😙

[PandoraPenguin]

I am having a hyster and my remaining ovary removed in September. This will be my 3rd surgery in under 7 years. My key issue is that my endo causes adhesions which in turn cause me massive pain, particularly as they like to attach to my bowel. Dr says he thinks my remaining ovary may be damaged. He feels the best chance of long term quality of life is the hyster as there will be less to generate endo so less adhesions will be caused and there will be less for them to latch on to.

I'm not thrilled but my first lap just removed adhesions (non specialist) and I had 2 yrs pain free, my next removed adhesions, endo and pelvic congestion, left ovary and tube and I had 2.5 years pain free. I don't want to be having a lap every 3 years so am trusting my BSGE Dr. He did say at the last lap that if it didn't fix things that this would be the next step

[Helen_justtired in reply to PandoraPenguin]

I have had 7 surgeries so far so I know this is not quality of life. Its plain terrible ☹️ good luck

[Sunflower1968 in reply to Helen_justtired]

How are you now? X