Just found out I have endometriosis

[Daisyseven]

Hi so 2 days ago I went through laparoscopy surgery to remove a cyst on my left ovary. They also mentioned they were going to look for endometriosis. When I woke up and the doctor came round to discuss what they had found they said they did find endometriosis which was on my bowel and bladder they successfully removed the cyst which was a chocolate cyst due to the endometriosis but wasn’t able to remove all the endometriosis.

They also told me the removed a uterosacral endometriotic nodule and they have sent it for histology.

They told me it was at a very serve stage and even though I’m 25 they suggesting thinking of starting a family sooner rather than later as I will need a full hysterectomy after having children

Has anyone else been told this ?

[Christin_a]

Hello

Please ignore what your Dr told you. They clearly aren't well versed in endometriosis. You don't need to have a hysterectomy at all with endo, yes some people choose too but it is definitely not what they should be telling you will have to happen.

As you have endometriosis on your bowel and bladder you need to be referred to a BSGE centre (I'm assuming your in the UK with the information I provide). This is required as per the NICE guidelines for treatment of endometriosis. These BSGE centres are specialist in treating endometriosis, and are made up of nurses, gynecologist, pain specialist bowel and bladder specialist etc. These people will be able to give you the correct advice on what options there are for you.

Please don't let what they told you scare you as unfortunately there are alot of Dr's with old school thinking such as saying a hysterectomy is a cure (it's not, but I think that's what your Dr was alluding to by suggesting you have to have one).

For now rest up and concentrate on healing from your surgery. But definitely call your surgeon or gp (depending on where in the UK you are one or both can refer you to a bsge centre) and ask for a referral to a specialist centre, you can Google these centres to find where your closest one is.

Christina

[luthien in reply to Christin_a]

I'd add to that it doesn't need to be a BSGE centre; I had mine privately with a specialist, whom has BSGE certification; he has his own centers with other specialists around Cheltenham, both NHS and private.

It is important though to check and google the specialist to see their qualifications, experience, skills and certifications

[Alita88]

Hysterectomy does not cure endo! All real specialists agree. Why is this misconception still around in the medical community? Sorry about your diagnosis. He/she should have excised all the endo if he were a bit more trained. That's why you should see a real specialist. I had an 8 hour surgery as my endo was sever and everywhere and not once have they suggested hysterectomy.

[applebird]

Hi Daisy,

Yes I was told this also at the same age. I agree with Christina regarding BSGE centre (only available mainland Uk though) and insuring you are with an endo specialist.

I disagree with regard to hysterectomy that you "don't need one at all" with endo, if you had mild disease I would say this would be right, however with invasive aggressive endo such as you have recurrence could be pretty high and it may be the end point such as it is for myself. It's not a guaranteed cure and not certain that you would need one, a matter of seeing how things are with time and trying all alternatives before that point. Any decision you make with regard to a hysterectomy is a personal one and they aren't going to do it tomorrow, or at all necessarily, so breathe!

I'll summarise my story

Diagnosed at 25, had a further lap 4 months after the first to remove stage 4 disease. Told I would need to get pregnant asap, second doctor told me don't leave it beyond age 30 (I wasn't ready for a baby). Endo returned at 27, also diagnosed with adenomyosis, told hysterectomy only way to ultimately resolve the problem. Put on a few courses of prostap and further surgery booked. Had 2 surgeries at 28 following MRI, nodule in my bowel and told to be prepared could end up with a colostomy temp or permanent, thankfully didn't). Endo returned at 29, also had focal adenomyoma, booked for 5th surgery, told should not delay children any further, got pregnant quickly but 2 miscarriages before successful pregnancy. Surgery was put off. Breast fed for 9 months post preg, got checked at hospital, focal adenomyoma had disappeared and endo symptoms improved vastly. Surgery cancelled. About 9 months after stopping breast feeding endo returned, by this point I'd also had gallbladder removal and caesarean as well so 6 abdominal surgeries in all. They were of the view that any more corrective surgery could cause more damage due to scar tissue build up (increases with every surgery and causes problems if there's a lot of it) and would essentially be a waste of time as I'd end up back in hospital again anyway within 18 months. Advised to cope with pain medication, try and get pregnant again or have hysterectomy.

I'm now 34, planning on having another baby hopefully, after that or if I can't then I'll go for a hysterectomy circa age 40 which I'm happy enough with as I'm tried of being ill.

So yes a hysterectomy doesn't have to happen. It all depends on what way your endo is. I'm presuming they'll bring you in for a second surgery to try and excise what they left? You could find that you have no symptoms for 5-10 years after this or ever, or you might be like me and have quick recurrence nobody knows. There are other avenues such as hormone injections that could give you some relief and let endo growth die back to some extent without surgical intervention. Going on the pill back to back too but this generally only really works with mild disease. Basically if you can have as little surgery as possible then it will prolong the time until you may have to consider hysterectomy - if you have disease that recurs. Endo can do a lot of damage to your internal organs esp if aggressive so it's important to try and keep it at bay as much as possible.

Here's the link to the Endo centres info, find out more about the Doctor who treated you, if they aren't an endo specialist or on the list here then get a second opinion.

bsge.org.uk/centre/

There's also a website called endoresolved that I have always found helpful and gives a lot of information on managing endometriosis, various treatments and so forth.

Concentrate on recovering and processing all this information regarding your diagnosis. Don't feel pressured to have kids straight away or at all if you don't want them, if you do then make it a priority to start moving towards that goal at some point maybe sooner (30ish) rather than later (40ish), in fairness this is the same sensible advice any woman would be given regarding fertility. Hysterectomy is the last option when all else has failed and any more surgery would do you damage basically or in extreme cases it may be needed sooner than this. It doesn't guarantee a cure as some endometrial cells can be left in the abdominal cavity and you can have some deposits left too, but if you take away the womb and ovaries (hormonal supply stimulating endo growth) then that takes away a large part of the problem. You've only had one surgery thus far, so there is a lot of fight in you and lots of options to try.

I hope you feel better soon, try and not worry - it's a medical condition like all others and the key to it is finding the management regimes/treatments that work for you and getting the best quality of life you can! It will all be ok xx