Is it time for a hysterectomy?

[gillianc14]

I've suffered from endometriosis since I was 17 I'm now 32. I had a cyst removed from ovary in feb but they said they couldn't see endo but it's more than likely I have they just can't see it!! I've now been officially diagnosed with pcos and been referred for llaser treat for excess hair. I suffer from chronic pain, periods are awful, feel exhausted most days and I've had enough now. Do u think I should ask for hysterectomy or would they not even consider it at my age? I have 2 children and not looking at having anymore. Xx

[Ppdotter]

Hi

Your post rung a bell with me. I'm the same had endo for over 20 years 5 laps/removal and 4 miscarriages and no children later I'm now too old. Everyone asks why I haven't had a hyst and I wonder myself but my consultant who I've known for years and who I have great respect for said a hyst will not cure endo pain. So I have a mirena coil and since having this things are better. Not perfect by any means but better. Do hope this helps a bit hang in there.

[Juleyanne]

It is a terrible dilemma Hysterectomy or live with the pain. The major problem with the big H, is statistics are overwhelmingly stating that this major surgery does not always work in many cases. I have read as much as 90% fail and pain returns. Adhesions, scar tissue which often forms after repeat pelvic and stomach surgeries can make organs adhere and cause further pain and referred nerve pain. A endo adhesion gyne specialist at a talk once said that treating endo and adhesions must be radical. Because endo and adhesions can proliferate to other areas and can be extremely hard to find, removing everything, often with bowel resection gives you the best chance of recovery. However, even with adhesion barriers, scar tissue can reform and cause chronic pain after surgery. It is a big problem. I believe that is why it is essential to have an endo adhesion specialist gyne operating

and more often than not, many of these surgeons can only be found privately. With such high rates of failure, I would not trust a general gyne or worst still registrar/trainee surgeon, which is often what you get in many NHS hospitals.

[Leannesmith]

I had endo

Suffering really bad with my monthlys

And mood swings

At the age of 42

Got 4kids

I asked them for hysterectomy

And iv had it now

Just over 2 months ago also they took my endo away

At the same time

They have left my ovaries in

As drs was saying they dont want me to go through the change

Early

The only thing im suffering With

Is back ache as the endo

Was connected to my spine

But also found out endo can come bk xx

[As-17]

I'm the same as u gillianc14! Same age and 2 children, had endo since begin period! Now have stage 4 endo with organs stuck together

[stevieflp]

Hi - I am sorry what you are going through.

It is now acknowledged amongst the 'real' endo expert consultants, that a hysterectomy is only helpful if you suffer from adenomyosis (a form of endo in the uterine muscle). This can only be suspected according to symptoms or bulky womb identified via examination, laparoscopy or MRI but cannot be 100% diagnosed until after a hysterectomy and biopsy results.

Many ladies have endo that is not of the uterine muscle but is within the peritoneal cavity outside of the uterus. This can stick internal organs together (causing symptoms often fobbed off by GPs as IBS and can affect the bladder, chocolate cysts on ovaries, space between rectal/vaginal called pouch of douglas etc. When this is the case, a hysterectomy will not clear this type of endo at all.

Sometimes drugs are offered which put you into temporary menopause in the belief that this with get rid of the endo. What it does is temporarily suppresses it, whichever type you have, whilst causing havoc with your natural hormones. It can give temporary relief. Generally, once this is stopped, over time the endo symptoms will return because it was not removed. I have heard gynaes say that if this helps then a hysterectomy is likely to help. however, they may not have identified what type of endo you actually have.

The experts now think that these two types of endo are not an extension of each other so one does not necessarily cause the other. Some ladies do, however, unfortunately have both types. In which case alongside a hyster, the only way to effectively deal with the peritoneal endo at this current time is excision surgery of the actual endo.

Being that adenomyosis is tricky to diagnose and difficult to identify if pain is due to adeno or peritoneal endo, it seems to make sense to to have a lap to diagnose if there is endo widespread in the peritoneum / rectal vaginal etc and if so, get that removed first and then see you still have pain. Providing the surgeon has removed all peritoneal endo (and not just patches), any further pain would then likely be from adenomyosis. Apparently a skilled endo consultant is more likely to be able to tell which it is likely to be from the types and nature of pain experienced. Very difficult though when pain radiates everywhere.

I was suspected of having adeno but I underwent total radical excision of all peritoneal endo from the exterior of my uterus, bowel, ovaries, bladder, US ligaments, recto/vaginal, diaphragm . . everywhere. I have not had any further symptoms for the past 3 years and so have therefore not undergone a hysterectomy.

Dr David Redwine (now retired) said that it is a misconception that endo always comes back - it is generally because a surgeon has simply not excised it all and it is that which is causing the subsequent flare ups, not that which was origianally excised.

My first gynae consultant had said I was a total mess and my only hope was a hysterectomy and removal of ovaries - she was obviously doing her best for me but within the limits of her own surgical expertise - and it was limited. She admitted to me latter when I asked about excision that she 'only does a little bit of excision surgery'.

I recommend a book called "Stop Endometriosis and Pelvic Pain" by Dr Andrew S Cook (one of the top US endo consultant surgeons).

[Emilyruth]

In a lot of cases a hysterectomy won't cure your symptoms because the endometreosis deposits can be placed in other places other than what will removed. I have heard of deposits on the bladder which couldn't be removed by laser either. I am tired of my symptoms now, I'm 26 with no children but have no interest in them either. But taking it out won't always remove the problem xx good luck xx

[spammie85]

hi I am 28 n going in for hysterectomy in the morning I have given up and am trying anything and everything. I even spent 50 pnd on a tens machine cause I have had enough now. at the minute I cant go out newhere on my own I struggle just getting about the house and completeing daily tasks as the endo has affected my mobility and I use crutches now to get about. I hope you get sorted soon but you are definitely not too young too have a hysterectomy. good luck feel free to message me anytime.