Has anyone else only been diagnosed with Endo after they had a Hysterectomy

[fatefulserendipity]

Has anyone else only been diagnosed with Endometriosis after they had a Hysterectomy?

[Pinknickers]

Hi, yes is the simple answer. I has a lap at 16 for what was thought to be appendicitis, but came back as normal, then another at 19 and was told I had IBS (no other symptoms than pain). I then steered clear of medics, and despite a couple of miscarriages, went on to have 2 babies. After those things got much worse with horrendous pain and constant bleeding. I had a subtotal hysterectomy (left my ovaries and cervix) but the pain and bleeding continued. Eventually last year I was refered by a general Gynaecologist to one who specialised in Endo. He removed my ovaries and said I had severe Endo. He has overseen my HRT and has improved my life beyond recognition. It's rediculous that it took over 20 years and numerous surgeries, but it's such a relief to finally have a diagnosis as I did think I was going mad. I know having a hysterectomy in my 30's was not the normal course of events, but it was (eventually) the best thing.

Hope that helps.

[fatefulserendipity in reply to Pinknickers]

Thank you for replying

I had my hysterectomy in January this year and that is when the endo was diagnosed. For me the hysterectomy was not the best thing because my pain has come back, i am now being referred back to consultant. Six weeks wait

I just think it is weird i wasn't offered a lap first

Ans all i was told well actually I was the one that asked if anything was found and all he said was Endometriosis and I said is it gone and he said Yes. And that was that

[Pinknickers in reply to fatefulserendipity]

Did they take you ovaries during your hysterectomy? Oestrogen will stimulate any Endo deposites which may be causing your pain or it may be scar tissue. Sounds like you could do with seeing an Endo specialist. Check out the BSGE website. They list specialist centres and under the NHS constitution you can ask your GP to refer you there instead. Centres also have a specialist Endo nurse who you can contact by phone for advice & support whilst you wait for your appointment,

The Cons who did my hysterectomy said nothing about any Endo when I was still in pain after the sub total, but the Endo specialist who did my final surgery said I was riddled with it. I have never been pain free (& never will be), but because I eventually saw someone who knew what he was doing, I'm in the least pain I have been my entire life. So little is understood about this vile disease it is essential you get seen by the right person.

Best of luck.

[Pg55]

Mine had come back since having a hysterectomy ( as I kept an ovary ) . Am now on Zoladex and waiting for further surgery .

[fatefulserendipity]

Yes had one ovary already removed a few years back due to dermoid cyst. And they removed the other when the did the hysterectomy.

I am on premarin. I definately need to see a specialist, thank you for the link.

They put me on Zoladex to see if it was endo apparently if it gave me relief it was endo but if it didn't it wasn't ! The whole thing has been a sham its disgusting we get treated like this and left waiting for so long.