Endo, polysistic ovaries and Interstitial... - Endometriosis UK

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Endo, polysistic ovaries and Interstitial cystitis

Hdhskdhdhdh profile image
8 Replies

I've just come out of my lap and I'm heartbroken.

First off they refused to dress my wounds and then the doctor came in and told me to stop crying because people have it a lot worse.

He found two pouches of endo that he removed and I have a lot of endo over my womb that he didn't remove.

I also have polysitic on my right ovary and my left is very englarged.

He told me with these things, that the way they were shouldn't of been causing me as much pain as I was in and that I should stop exaggerating when I describe my pain.

He then said I have Interstitial cystitis, which is incurable but treatable. I have to have ten weeks of meds via catheter. Can anyone tell me if it hurts or not?

I'm so scared for the future and heartbroken at how I was treated. I've come out feeling brushed off and that life isn't worth living if i have three incurable illnesses.

This has ruined my career and personal life and even after the op, I feel hopeless and like I haven't got many helpful answers.

8 Replies
kelbelle107 profile image

That's sounds terrible and you have been treated horribly. I would put in a formal company and ask for a change of doctor. You should not be made to feel like a nuisance 😠

As for the other things I'm afraid I can't help with 😕

Summer143 profile image
Summer143 in reply to kelbelle107

I too have IC and have bladder installations every 3-4 weeks. There is nothing to worry about just make sure you empty your bladder before and then don't go to the toilet for about 2 hrs after if you can hold it that long!! It's a bit uncomfortable but it's over pretty soon. I also have endo, fibroids and ademyosis, how unlucky we women are!!

Adhamilton profile image

I've had this treatment via catheter and it DOESNT hurt it will hope so much with your pain 😀 I had it for six weeks then every month for a year it did really help!! I'm now waiting for a lap as I'm in so much pain and they think I have endo too!! I get constant kidney infections have done for 21 years and a kidney op so I know how you feel I'm hoping they found endo so I have an answer for all this pain my ulterus is very bulky in my scans and when gynaecologist examed me he can feel it? and suspects endo!! 😀Xx

Adhamilton profile image


GrittyReads profile image

Hi Hd ...

Are you in the UK? If not you need to check for an 'Endo Soc' where you are.

However, if you are in the UK you could/should be seen by specialist Endo surgeons at one of the 'BSGE Clinics' in the country. Contact 'Endo Uk' about this, link at top of this page. If any GPs, or general Gynaes, think a patient's Endo is sufficiently bad they can/are supposed (there is a specific protocol in place for these referrals) ... to refer you to one of these 'specialist Endo Clinics' where the Gynaes are not the general ones that are in many hospitals, but are absolute specialists in Endo. They know far more about: finding Endo during a lap: its identification (there are several different forms, some not very obvious - & they can cause the worst pain), and it's removal, especially if it is in: 'difficult to operate on' areas.

From what you say your surgeon said (NB Don't name any names or places on here, as Endo UK - as a charity - can get into trouble about it), he doesn't sound like a BSGE one. Anyone who knows anything about endo knows that the amount of it, has nothing to do with the amount of pain! It's the type, and where it is, and lots more ...

Contact 'Endo UK'!

Also, check more posts on here, and all links (and those on Endo UK ), to BSGE clinics. Also check posts on here by Lindle and checkout her Facebook Group on Endo.

Sadly, Endo is one of those conditions where we have to become our own best experts.

Hope this helps.

Starry profile image

OMG that sounds so traumatic an experience! It's widely known that pain triggered can vary greatly and not relate to the extent and location of Endo. If this guy doesn't know that then he isn't worth his salt. Its unacceptable unprofessional behaviour. Definitely do contact PALS at the hospital and make a formal complaint.

TeapartyAlice profile image

That's so sad! I cant imagine how it feels to be in such harsh situation. Please dont let endometriosis ruin your whole life, you have all our moral support we can give. Best wishes to you, keep fighting girl! There is nothing you cant handle!

AmyC71 profile image

Such bad news :( Believe me, I've seem people with endometriosis, I know it's very hard and there are certainly worse cases but nevertheless its very hard. A lot of people live full life even with such diseases, just dont give up, please!xx

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