Endometriosis UK
37,386 members32,881 posts

Just diagnosed and needing help

Hello, I've had health issues the last 4 years. It started with very painful rashes on my face along with fatigue, then progressed to really bad abdominal pain, insane abdominal swelling, rashes on arms & chest. I've been tested for everything and 2. 5 years ago I had an ultrasound showing 2 large fibroids outside my uterus. Then 2 years ago I had a laporoscopy to test for endo. I was told I didn't have it & was discharged. I went on the pill in the run up to the laporoscopy (3 months with no break) and since then I've had no abdominal swelling or major stomach pain. But I've continued with really bad fatigue & hip & lower back pain both are quite disabling and I've not worked for 6 months now. I'm about to be made redundant due to my health. I've been checked for everything and been told my fatigue is CFS and likely stress related. I was referred to orthopaedics due to my hips. The consultant saw something in an xray that looked like inflammation in my illiac joint & sent me for an mri. I met with the consultant yesterday, both of us expecting an arthritis diagnosis but he said my joints were fine but I have severe endometriosis throughout my pelvis. My ovaries were not visible. He said he didn't know a great deal and couldn't advise and that is need to be referred back to gynae which means another wait. I've already waited 6m for gastro, 6m gynaecology & 9m orthopaedics and now another 6m again for gynaecology. I just feel so shocked and lost as to what to do.

I don't have typical endo symptoms. My periods are fairly light, regular & not that painful. My symptoms of back pain & fatigue are present throughout the month and I don't seem to feel worse during my periods. My back pain is constant and I'm rarely pain free from that. My hip pain does come & go. It seems to flare up for Few days and then calm down. I've yet to track this with my cycle but as I've said it's definitely not when I have my period. My fatigue is also varied. I've never felt what I'd consider normal for the past 4 years but I'm certainly better than I was. But I couldn't manage to work and it's difficult to plan for things as I never know how I'll be. Its felt like my life has been in hold the past 4 years.

I just find it all so confusing that my symptoms don't really seems like typical endo symptoms. And that my laporoscopy had no signs of it 2 years ago yet now its really bad even though over that time some of my symptoms have improved (stomach) yet the back and hip pain is new. I've no idea what the future holds for me or what my treatment options are. Or if all my health issues could be explained by this. So many questions bit I won't see a constant for 6 months.

I would be so grateful of any help or advice.

I'm 39. No kids. Take very good care of my health (yoga, vegan, meditate... you get the type!)

3 Replies

Hello, I hope it can help you, maybe if you go gluten free and absolutely no wheat on your diet, same as sugar, soya,.

Try it for four week and see if it help you.

Also will be good if you can check food intolerances.

I have endo and cyst on my ovaries my gynaecologist want to do a hysterectomy but I completely refuse and I when gluten free, cut all sugars, soy, I when completely dairy free and my symptoms all dissapear.

Still have some pain when my period come each month but nothing like before.

I am so glad I did it, I bough a book from Wendy laylaw her book cure Endometriosis Naturally it has really change my life.

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Weirdly, I've actually already followed diets like you've suggested during this 4 year period that I've been ill. I initially thought I had coeliacs so went without gluten for quite a long time. I followed the autoimmune paleo diet for about 18 months which was free of all grains, dairy and other common inflammatory foods (nightshades etc) and I'd say I was probably at my worst during this time.

About 12 months ago, I decided to stop trying to 'fix' myself and just be more relaxed about diet etc, I've never been comfortable eating meat so since then I don't eat meat, dairy or eggs but do have some gluten in my diet. Since the diagnosis yesterday, knowing a bit about autoimmune diseases, I did consider giving up gluten again but I'm reluctant to further restrict my diet.

I actually saw that book and thought about getting it. I'll go get it now. Thanks for the advice.



I am a vegan meditator too (though don't like to move much, preferring to sit and read rather than exercise!)

I have stage 4 endo. Like you my periods were never heavy but they were painful.

After surgery/hormones etc I am still battling. My main symptoms now are constant back pain (almost like I have a UTI), burning pain in my hips and pelvic pain. The symptoms of endo are so varied and particular to the individual I don't think there is anything that endo can't be blamed for!

Although it's not the greatest diagnosis, it's not the worst. Hopefully this is the reason for your pain, once you know what the problem is you can get into battle mode!

Wishing you lots of luck and I hope you feel more comfortable soon x

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