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Endometriosis/Hysterectomy help

(9 Posts)
eemie Sat 15-Jan-05 16:34:15

I have pelvic pain due to endometriosis which has just been diagnosed at laparoscopy. It's too extensive for lasering and I can't take testosterone derivatives or the pill. Fertility is (sadly) no longer an issue. I'm seriously considering hysterectomy as I'm incapacitated by the pain. I'm wondering if it's worth trying GnRH first (Prostap, Zoladex or similar) but also wonder if that would just prolong the agony. Any personal experiences? Started an earlier thread about this but got no replies - would really appreciate any info. TIA

eeyore123 Sat 15-Jan-05 16:39:10

poor you. my mum had endemitriosis and ended uphaving a hysterectomy, despite trying all the drugs going. she said it was such a relief to not have the constant pain. nan had it as well. (isn't it supposed to be hereditary? )

Christie Sat 15-Jan-05 17:21:52

Message withdrawn at poster's request.

eemie Sat 15-Jan-05 18:59:26

Thank you both. I've done a fair amount of research and haven't come across anything about it being hereditary. I certainly had no symptoms until after my daughter's birth and neither my mum nor my sisters have any symptoms. Glad the pill is helpful for you, Christie. eeyore, several women have said the same to me about hysterectomy...sounds hopeful...

eemie Sat 15-Jan-05 21:57:50

Bump

Snugs Sat 15-Jan-05 23:37:22

No help I'm afraid with advice, as my symptoms have (for now) died down considerably since having kids, but masses of sympathy. I fully expect to have to face this decision in the future as the symptoms are building up again over time. Definately think that there is a strong hereditary factor.

My mum and aunt both had symptoms, aunt more severe and struggled to conceive - but never diagnosed as this was in the 1960s. My sister had symptoms for years but never had a diagnosis until after MY laparoscopy, when she decided to push the issue with her GP.

hunkermunker Sat 15-Jan-05 23:50:34

Hi Eemie

I have stage 4 endometriosis and PCOS and the pain has been worse than labour. Not sure if I can get pg again (DS conceived on Clomid, periods returned after 6 months with a vengeance, despite breastfeeding).

If you do have a hyst, you need to get rid of the ovaries too since that's the trigger for the endometriosis (from what I've read, people who've had hysts and have even a fragment left can still get the pain).

Who did your surgery? If feasible for you geographically, can I recommend Mr Robert Richardson at Chelsea & Westminster (and I think a hospital in Guildford)? He's done two laseroscopies on me - before the first he said he'd give me five years clear, after the first he said he hoped it would be two and said he'd never seen such a mess (I tend to make light of pain and he didn't realise how bad it was from talking to me before the surgery). I went 23 months between surgeries and conceived DS 11 months later.

this is a link to the Oxegene study which is seeking to discover whether there is a hereditary link with endometriosis. FWIW, I think there may well be, but I also think there's a strong immune system link too - I know my immune system's not great and it seems that a lot of people have the 'retrograde menstruation' that has been blamed for endo (The Telegraph had an article a few years ago about how it was wearing tight trousers that caused it because women in India didn't get it as much (FFS!!! Like that's the only difference?!!).

I'd be inclined to give the GnRH a try first, but having said that I don't react well to drugs, so maybe I wouldn't. I did take Provera (not GnRH, obv) and it made me bleed for over a month and made me think psychotic thoughts...!

HTH a bit hun. Hugs for the pain - I know how vile it is. xxxxxx

SofiaAmes Sun 16-Jan-05 00:17:57

Here's a good link on endometriosis and some treatments. It sounds like surgery should be a last resort.

eemie Sun 16-Jan-05 13:20:53

Thanks everyone

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