can endo return following a full hysterectomy, and has anyone had this happen.advice please.

[Nicole_h25]

I had a full hysterectomy last year in April, however I have never had much info from the gyno who performed the operation ( it 7 years for the diagnosis) and I have no idea where the endometreosis was in my body, and if it has been removed, all i get is ( "it shouldn't give you anymore trouble" ),Despite my doctor who wrote a letter specifically asking that question, which the gynaecologist still didn't answer !!!!!!!!

Since my op I always have pain during, or after sexual intercourse,( the same as before if not worse) and last week I was bleeding heavily following sexual intercourse, and my doctor thinks she can see endometreosis deposits or certainly scar tissue that hasn't healed following an internal examination, I have now been reffered to a different hospital and a different gynaecologist for a another opinion. ( this will be third gynaecologist and 4th hospital)

If anyone has any advice or help i would be most grateful as it seems the only info i get is what I learn on here!!

Thanks

Nicole

[luluseru]

Hi Nicole, I had a hysterectomy, but kept my ovaries to prevent me from going in to menopause. Endometriosis did come back as i was still producing estrogen. I am guessing you had your ovaries removed, if not you could have had a cyst on your ovary which burst causing pain and bleeding.

For your next appt with the gynae have a list of all the questions and ask your gynaecologist for a copy of all your notes from your previous surgery. It is always helpful if you write a symptom diary for the whole month ie day 1 pain -scale 2-3 or a bad day might be 7-8, heavy bleeding for 3-4 days, pain during sex 8-9 amouth of blood, your mood moderate/ very low , headadches how often, back pain - be specific , and score all your symptom individually so your GP and your new gynae has a clear picture . Go back to your doctor armed with this info mention your latest episode of bleeding after intercouse and say that you cannot cope with the pain and ask for your notes from the surgery again. You just have to be persistent and on the case about it and not to take no for an answer. The pain is there to tell you there is something wrong and if you have had a hysterectomy you need to know where you are bleeding from, dont feel bad It really isnt acceptable. Stick with it.

Good Luck lu.

[figgy]

Hi Nicole,

i had my total hysterectomy in September 2010 and i have had a further lap to remove more endo in December 2011. I had a terrible time after my hysterectomy with complications (a blocked kidney) and i never felt any better still massive amounts of pain etc.

I had a further lap and excision just over a year after my hysterectomy and after 3 weeks i did start to feel better. My gyny removed endo from both left and right pelvis areas and he said it is really sticky in there. I will find out in august what that means when i see him (the ward forgot to put me on the system for my follow up appontment so i get mine 8 months after my op). Anyway as they had such a job removing everything when i had my hysterectomy as tubes and ovaries were stuck solid to pelvis it could be that some got left behind. I just dont know but the sticky comment suggests i haven't heard the last of it.

I do have a gyny who specialises in endo and have been seeing him for about 8 years. I was refered to him by a local gyny who after my first lap stiched me back up and said i can't help so i go out of the area but worth the travelling and i would make sure you have one because without the specialisation they haven't got a clue. I was lucky the one i saw was honest and did what was best for me.

I hope this helps. X

[stevieflp]

Hysterectomy will only sort you out re end if the only place you have it is on the uterus and/or in the uterine muscles. Endo is not actually just a disease of the uterus, it i generally in the abdominal cavity and many ladies find they have it on bladder, bowel, piuch of doublas (area between vagina and rectum - which can cause bad sexual pain), on ovaries as endometrioma (chocolate cysts) so, unless you do have it just confined to the uterus, and unless you hae the rest of your abdominal cavity excised for endo elsewhere - a hysterectomy in itself might well not have solved all problems.

Have a look at the website of Dr A K Trehan who is a specialist endo surgeon. He advocates that a hysterectomy should always be done in tandem with excision of any other areas of endo. It really is a myth that endo is a disease just of the uterus - it can even rarely seen on the diaphragm and lungs so should never be approached as being a hysterectomy cures all unless that really is the extent of the spread of a person's endo. Where it is in the uterine muscle then a hysterectomy will definitely help that particular area that is causing pain but there could be others and this should have been looked for during surgery.

I definitely agree that ladies need to see an endo specialist rather than a general gynae for anything other than really minor endo - but even then, I would say a real specialist as it is best to prevent it from getting advanced in the first place - which hapens because we all seem to have waited years for any doctors to have a clue what is going on.

Regards

[NH88 in reply to stevieflp]

This is the best explanation of endo i have seen.

Thank you for this.

I have had a total hysterectomy and oopherectomy with cervix removed only just over 1 year ago by a specialist. I was lucky that the endo had nit managed to go anywhere other than my uterus fallopian tubes and ovaries. It was a mere millimetres from my bowel and if lwft would have been artatched and absorbed into that organ.

My older sister was not so lucky. Left too late and not a specialist on the nhs she has had a total hysterectomy done aswell but it has attatched to most of her internal organs and so although she is not in the debilitating pain she was...it can still cause problems.

My consultant refused me any hrt after my surgery untill after month to month and a half. Then im on estrogen only due to my age.

It has been researched that if you dont give it straight away the endo has nothing to feed off and so it starves and dies.

X

[Chrissie66]

Even a hysterectomy with excision surgery is not guaranteed to work. If even the tiniest spot of endo is left behind, the chances are that you're going to have problems again in the future.

The surgeons claiming such high success rates have chosen the patients who are suitable for their type of treatment. As it stands at the moment, there is no miracle cure for endometriosis. Once you've got it, unless you are one of the extremely lucky ones, you've probably got it for life.

I'm so sorry we haven't been able to give you better news

Take care x

[Nicole_h25]

Thank you all so much, I think I have been very naive in the endo problem I have, it has never occurred to me to ask for my notes, or medical history, I will I think call tomorrow the hospital and perhaps try to get them before I see the new gynae, and will go armed witH many questions, I have been lead to believe that once the hysterectomy was done, all problems would disappear, since reading lots of information, I understand I am wrong and shall be more prepared , thanks again

Nicole

[LittleMissManx Moderator]

Hi Nicole

Did you have your ovaries removed when you underwent your hysterectomy or is it possible some of your pain is coming from there?

I no longer have either of my ovaries and I find myself in a similar situation to you

in that my abdominal pain and discomfort have not subsided post-op and more recently has increased. Some days it hurts down my right hand side when I put one foot in front of the other I dont have any bleeding but I am concerned that my pain is coming from pockets of endo left behind despite the removal of the uterus as suggested by Chrissie.

I have moved areas away from my former consultant who I had every faith in due to his skill as an endo specialist. I have registered with a new GP and he has referred me to the local hospital for further investigations. My concern now is that the local hospital is not specialised enough in endo so I am not sure what the next step will be.

Please keep us posted in your efforts to find answers to your post hysterectomy woe.

Take care, x

[Nicole_h25]

Hi, I did have both my ovaries removed, I have today received my notes from my original gynae, it basically said I have endo In my pelvic area, I have had the full hysterectomy. My notes had all my letters in except I know that my doctor sent a letter to the hospital asking if he had removed the endo, he never got a reply and the letter is not in my file !!!!! I was put on hrt patches which didn't help with the menopaus symptoms so I am now on elleste tablets, but I have no idea if these are likely to make my endo worse, role on 27th when I have my apt with the new hospital