Endometriosis - any "good, positive" stories please?

[superme]

am suffering from this and its now affecting my life, feel very down about it

Oh dear, I'm so sorry. What's the problem in particular, if you don't mind my asking - is it the pain? If you're very tired, I find the best thing is to try to let yourself sleep as much as you need without feeling guilty, if that's at all practical.

Have you tried joining a support group? I found it really good. You can find a group here or post on the Endometriosis Uk message board
here

FWIW, I've been through some very bad spells, and am now in a good spell, and am really appreciating it and feel very lucky. My bad spells have come to an end (for now) through good surgery - it does exist and can work.

Can you have surgery if you need it?
Hope you feel better soon.
(whispers: have a hug )

I feel for you. I suffered for many many years and was told, periods are painful, get used to it more times thanI care to remember.

I was prescribed antidepressents and valium.

I was told the chance of my conceiving naturally were virtually nil

however 20 yrs later I have 5 beautiful dc's and no more endemeriosis. For me, pregnancy really did clear it up. It took 9 yrs to conceive dd1 and after that, gone, just like that.

I used to despair and wonder if I really was going mad.

Eventually I self reffered to a Harley street doctor who diagnosed me there and then and had me in for surgery within weeks. IRecovery wasn't quite that quick but that was the beginning for me.

I hope you find some comfort too.

liahgen66 - my story is similar to yours .. took me four years of fertility treatment to have ds1 ..then dd happened naturally ..since her birth I am 90% symptom free ..and when I was diagnosed the consultant told me that I would be living with it for life as I had such damage ... its a strange disease isnt it ?
But Superme there's hope alright ..x

I suffer from it too. I was told i could never have children when i was 18. Finished my zoladex injections and concieved my healthy now 3.5 year old ds 2 months later. I still have symptomns from time to time but they have generally eased off. Hoping to start TTC my DC2 in the next few months

So sorry have you had any treatment yet??

Thanks for posting helps to know there are others out there!

Symptons are 2nd day of period have exruicating pains (Im sure yo know what I mean!). Hosp gyno diagnosed immediately after an internal scan, had lap 10 days later found endo to my righ ovary, said it was minimal all should be ok no follow up appt required...job done!

3 months later pain reocurrs same as before during period, wipes me out, have to lie down/sleep it off have tried to keep going but the pain makes me want to faint (again Im sure you know what Im talking about).

After lots of research found a consultant who specialises/has an interest in endo and am down to see him next Wedn.

Im wondering now if its something more as it only comes when I have a period

PS. Fertility not an issue as family complete

Hi,

I suffered for 5 years from when I was 12 to when I had a laparoscopy and laser surgery when I was 17. Then only had a period every 6 months (controlled by taking pill). Every 6 months I would have 4-5 days off work in excruciating pain, vomiting, diarrheoa, sleeping for hours and hours, really heavy periods - to the point where I'd just sit on the loo to save the mess! - it was horrendous. My poor DP didn't know what to do for me.

Stopped taking the pill and fell pregnant 6 months later - with one period inbetween. Now I have only mild twinges when I have my period. Pregnancy seems to have helped me a lot!

The surgery I had did help (believe it or not) - it was much worse when I was a teenager.

Is that positive enough??

Absolutely Im really pleased for you as having it at such an early age must of been terrible.

I just want it sorting! when the pain comes its a killer, really not exagerating but far worse than labour!!!! Knocks me for six, also worries me as I have a young child and no family, help around luckily (if I can call it that) the last bouts of pain have happened when my hubb has been at home.

Pleased for you though palace.

Laser surgery, staying calm (don't know why partic, but I made a huge effort to take it in my stride) and exercise helped me. And hot water bottles!

There's a good book by Kaz Cooke which is v helpful if you want to know more about the disease.

Mine hasn't returned since having a baby almost a year ago...

good luck!

Scary thought Superme but as your family is complete - they may suggest a hysterectmomy ..I know that's what I am lined up for if it comes back .
I had laser surgery and cautery , and months of hormone treatment ..

Maybe it wont need to be that drastic, but its an option ..

ummm apparently they dont push for this anymore ... also once a month I could bear...I think but a hysto - so very, very final and could lead to a heap load of other problems

off out but didnt want to ignore.

i have endo, had it since 200. told only 1% chance of conceving naturally.

fell preg first month of not using contraception! fell preg again 3 months later!!

had 2 laparoscopies, hormore treatment and hrt before falling preg.

since had ablation in 2006 as pain came back worse, but now no symptoms at all.

it will get better

xxxxxxx

thanks sowhatis....I have appt next week with specialist so will take it from there but have read loads today that says after a lap it symptons get worse before they get better which I hadnt realised I thought it was a magic wand that was waved and all was well!!!!

ah . well thats the difference then superme.. my symptoms are constant ..not just once a month ..I guess in cases like that then a hysterectomy could be regarded as a good idea...

Glad yours isn't as severe .