Hello! so nice to see an endo group here!

anabelsmummy123

HI, I'm Claire. 29 years old mother of one little miracle who took 6 years to appear naturally. I've had endometriosis, interstitial cystitis and fowlers syndrome since i was 14. These were not diganosed until 5 years ago...and boy what a releif that was. I now have Chronic urticuria and angeodema, since october last year and no cause can be found...i reckon its got to be linked to endo...all these diseases are auto-immune and have appeared one after the other over the years. I'm also awaiting diagnosis for lymphoma...we shall see. Anyhoo...I hope you are all as well as you can be and pain free...if not...i feel for you and all i cam say is that tomorrow is another day...let that be pain free! As for weight loss/gain/loss/gain...don't we have it tough...i reckon there are only 2 weeks in a months without the dreaded bloating...water retention...i have pain most of the time but only on my left hand side...have you guys found it difficult to lose weight? I put on 5 st with my daughter and have lost it all over 3 years although i'm still up-down....also i'm meeting a surgeon tomorrow for the first time to discuss ablation...after years of only being offered hormonal treatments which i dont find effective at all....would love to hear your stories and please feel free to add me.

Endo Sisters xxx

phoenixoncemore

Hi Claire,

Nice to meet you, albeit via internet! It sounds like you have had a really tough journey so far. I think there are so many of these conditions that can be linked but getting them recognised can be really tough. I wish you lots of luck getting your diagnosis and with your surgeon, I hope they can get some answers and solutions sorted for you. There's nothing worse than the waiting and not knowing.

I'm Sadie, and I'm 28 years old. I've been suffering for 12 years, and only recently when I nearly passed out at work did anyone start taking me seriously. I've suspected endo for a few years now but have been told that because it didn't show up on an ultrasound it's all in my head, to just man up and take evening primrose, to lose weight as it was probably becasue I had a BMI of all of 25.5 at my heaviest, to just go away and have a baby which should fix it.... urghh. I had my laparoscopy on Tuesday and they found endo. Although the doc did have a little go at me as it was "ever so tiny". I'm going to see my doctor to follow up and ask him to explain it to me properly on Wednesday. So hopefully I'll know more then.

I know what you mean about the weight loss. I put on about 3-5 lbs every ovulation and 5-7lbs every period, so I literally don't weigh myself on wither of those times. You are dead on about the 2 weeks per month in my case!

There is PCOS, Endometriosis, Fibroids and Crohns disease in my family, and on my mums side the last 3 generations before me have all had hysterectomies.

I personally suffer from irregular periods, painful periods and ovulation, clots, IBS, hair loss, iron deficiency, fatigue, bloating, nausea, dizziness, fainting and new symptoms keep on appearing all the time, which is part of the reason I pushed so hard to get them to look into it now, as I couldn't take it getting worse and worse and not knowing what was happening inside anymore.

I haven't yet decided if I want kids but I don't want the choice taken away, if you know what I mean. I'm not really in a position to have them at the moment, as I've only just got engaged and my partner and I are only in a rented one bed flat and I don't really want to until I'm in my thirties and a bit more secure. The main problem I run up against with treatment options is that is the first question they ask - "Do you want kids?" and they never seem too happy with "I don't know yet" as an answer!