Endometriosis UK

Some unusual symptoms

I remembered a few days ago that there was a time, a few years before, that I trawled this website trying to find people with the same symptoms as me and hoping I could make sense of it all. In most cases I found something similar at least.

It occurred to me that now I have found my own way of coping with it, that some other lady out there looking for some help or reassurance might find it useful if they read about some of things that happened to me.

I had cervical cancer in 2008 at the age of 30 and had a hysterectomy, just my womb not my ovaries. When I started to get pain in the right hand side of my pelvis and down my right leg, I’ll admit I panicked. Initially I panicked in silence from about July 2014 to October 2014, at which point I went to the doctors as the pain started to get worse. In October I went to see my GP, to protect his identity we’ll call him Dr U Sless. I advised him of my previous problems and said about the pain. He examined me, said there was nothing there and sent me away with some stomach tablets. That was the start and I won’t bore you with the amount of times I went back, the amount of times he said it was IBS and the amount of times he looked on the internet for an answer (really! I could have done that at home!). Anyway, he finally referred me for an ultrasound in Feb 2015. After waiting weeks and weeks, that eventually got done and it was confirmed that I had two cysts and suspected endo. I was then referred to the gynaecologist and since then I have had two laparoscopies, a right ovary removed and now awaiting to have the full hysterectomy and to go on HRT.

All that aside though, what I really wanted to share with you is some of my symptoms that aren’t necessarily related to endo, that I’ve been told several times have nothing to do with it, but I think it’s all connected, whether down to stress, or other things that this illness causes. It all started at the same time, so surely it has to be linked?

Weird symptom Nr 1

I have dizzy spells, where I want to drop to the floor like a stone. Dr U Sless swears blind that its stress and has had me on several anxiety pills. Which have made me gain two stone in weight. So now I’ll hit the floor a bit harder if I do drop! Eventually I just stopped taking them. I had to slowly reduce my dose as they were addictive. Unfortunately I’m still on the chunky side though! My conclusion is that its part of the endo, that tiredness where lifting your arm is hard work, and part stress, knowing that the tiredness is going to make your day incredibly hard, makes me stress and then it turns into a viscous circle. Don’t get me wrong, if you’re having dizzy spells, get it checked out, it could be something else, but I did all that and every test says I’m fine. I know though that some days I can’t walk across a room without holding onto something. I just try not to stress about it now, take deep breaths and then with any luck I’m ok the next day.

Weird Symptom Nr2

I get alot of discomfort around my groin area on the inside of my leg. Almost like a pulled muscle and some days I can’t wear underwear it gets so painful. I think this is my glands. Recently it has been confirmed that I had glandular fever at some point (they don’t know when but once you have it the virus stays in your system). There are some theories that this virus is related in some way to endo, but they’re not sure. Maybe also what causes symptom number 1!

Weird Symptom Nr3

I have pain all over my pelvis, not just where my ovaries are, but up my back and down my leg. My endo specialist said it could be related or it could not (very helpful) but I know it is. I never have one without the other. Its probably referred pain, but I thought I would bring it up as I spent around 12 months with people telling me it wasn’t related to my endo!

I’m hoping the hysterectomy works for me and all of my symptoms magically disappear. Unlikely I know but a girl can dream!

I just wanted to maybe help someone who thinks they’re going mad because their doctor is telling them it can’t possibly be related to endo. Its always worth getting something checked out if it concerns you, but hopefully this message might stop one or two ladies from going into a blind panic about their symptoms as they don’t exactly fit the Endo ‘brief’.

4 Replies

Many thanks for sharing these.

Here is my embarrassing weird symptom to add to the collection. I had 3 or 4 weird dizzy fainting fits in the 18 months run up to my diagnosis. In almost all cases I was needing to go to the toilet and ended up unconscious or semi conscious. The first time it happened I was taken to A and E because my vital signs were so bad but they found nothing despite repeated ECGs and put it down to low blood pressure. I suspect now with hindsight it had something to do with my RV nodule growing in size and affecting my bowel or lower intestines.

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All sounds horrible. I'm not 100% sure about this information but a friend of mine would faint when needing the loo and was told that this lowers blood pressure temporarily. Don't know if anyone else has ever heard that?


thanks for this. i have glandular fever. but i also have pain in my uterus area and groin, and find it hard to walk far because my muscles are so achey.

i had my appendix removed when i was younger, and a cyst afterwards that did disappear in the end, but nhs website says this makes you more likely to get endometriosis.

what resignated with me in your comment, is the dizzyness~!

i had extreme dizzyness at the start of my glandular fever, i'd never had dizzyness before in my life. i was quite concerned like you said. my friends kept saying maybe you're not eating enough, and i wasnt convinced of that

so thankyou so much for sharing your experience~! i just stumbled across this site this evening

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Sounds like we had very similar symptoms. I think in a few years when more tests are done they will find that all these things are related but they just don't know enough about it at the minute.

Personally, I found that once I accepted it was something to do with my other ailments and not anything serious, that it did get a bit better. I still can have a whole week where I can barely stand, but the difference is that I don't worry about it now. Before I think I was in a vicious loop of having the dizziness due to the virus or the endo but then I was making it worse by panicking and getting stressed, which made me even dizzier.

I think one of the hardest things is coming to terms with the fact that all these things have no cure. You just have to learn to cope with them the best you can.


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