Anyone ever have these weird symptoms?

I am currently in the process of being diagnosed with *something* by a confused consultant - endometriosis is one of the options, but my symptoms don't really seem to match up with the classic endometriosis picture so I'm just wondering if anyone else has had these strange presentations:

1. Symptoms which don't seem to correlate with the menstrual cycle - I have plotted my symptoms against my cycle and they look pretty much unrelated, not likely to get much worse around period time. They do come and go but not at the same time as the period. I do get period pain which is noticeable and radiates down my legs but it's not horrendously painful.

2. Thobbing/pain around kidney area, i.e. the small of the back between bottom of ribcage and top of pelvic bones.

3. 'Attacks' of feeling really ill (not as a result of pain) that resemble infection or an acute attack of inflammation - i.e. nausea, chills/tremor, loose bowels, that sort of thing. In my case I also get chest pain and suddenly rapid heart rate.

Thanks so much.......

19 Replies

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  • You sound like your in the same boat as me, I have pain in my stomach daily - it just happened to start when I bled randomly for the first time in 5 months and the pain has continued, along with the random bleeding. My bowel movements are the complete opposite but I completely get your pain and frustration because going through the exact same thing, along with just being exhausted pretty much 24/7. Hopefully they finally figure out what is wrong - with the both of us - I imagine its effecting your quality of life as it is mine. The one thing I have gathered over the past few months - try and stick with seeing just one dr - i constantly get parred off to everyone but only one of them has actually seen that there is more of a serious problem and is investigating it. Good luck and feel better soon xx

  • That does sound more like endometriosis than mine - with the irregular bleeding. Or perhaps a burst cyst, something like that? Have you had any scans? Hope you manage to get it sorted out too. x

  • Yeah I had a ultrasound back in October in which everything look fine, but my Dr said Endometriosis doesn't necessarily show up on ultrasounds unless you do have the 'chocolate cysts' and considering all the problems I am having with my bowels at the moment i'm assuming if it is endo, thats where mine has chosen to have fun planting.

  • Hello Crossrabbit,

    I have been diagnosed with Adenomyosis since 2005 after surgery & subsequent biopsy. Most of the symptoms you have been describing I am familiar with. I have these symptoms outside of the menstrual cycle- pelvic pain, sharp stabbing pain, bloating, migraines, back pain, fatigue, tired & sore muscles. During period time I also experience loose stools, and most of the other symptoms I mentioned before. I sometimes get a low grade fever with the migraines & I have flu like symptoms during ovulation & just before & after the period. I also have dull, aching pain radiating down the thighs during period, on rare occasions, the pain is all the way down to the toes, this is different from the sciatica which is a sharp, burning sensation. My Osteo- Specialist & Acupuncturist have attributed the lower back pain, tailbone pain, swelling knee, sciatica pain to the inflammation caused by the Adenomyosis & apparently I have joint damage as a result. BTW I get the sciatica & swelling in the knee on the same side-right side. The gynae has said that she has done hysterectomies on women & sometimes the lower back pain stops & sometimes it does not. I have used Traditional Chinese Medicine (TCM), acupuncture, herbal treatments, cupping & heat therapy, to successfully manage pain & other symptoms of the Adenomyosis. Given the joint damage & the length of time that I have been undergoing these horrid symptoms, I am planning to have a partial hysterectomy in Dec.

  • Your symptoms sound just like what I am suffering with!

    How do you get tested for adenomyosis ? I had key hole for endo and that wasn't found . I'm fed up of not knowing what's wrong X

  • I had a myomectomy in 2005, at age 28, when I was blacking out during period time. I also had heavy bleeding, inter-cycle bleeding, bleeding after sex, pain after sex, enlarged tummy & horrible pains. The ultrasound diagnosis was a fibroid, but when my doctor did the surgery, she explained that the tissue was a soft tissue, and not fibrous like a fibroid. She said that it was found extensively in the womb as well as a growth that was 5cm in diameter- like a grapefruit. The tissue was sent for biopsy & the histology report said Adenomyosis.

  • Thanks for responding to me. I have been back to the hospital and they've decided to treat me for endo in case it was missed.

  • Good news. I hope you get some relief.

  • That sounds pretty nasty, sorry to hear it. I've had several scans and the uterus looks normal in all of them, so hopefully I don't have adenomyosis. How did they first find it? The back pain and weird spells sound familiar, but the odd thing about my back pain is that it goes further up the back than you would expect, into the kidney area. I've been diagnosed twice with kidney infections but the lab work didn't support it and antibiotics didn't seem to make as much difference as they should have done. I have yet to get an answer from the gynaecologist of whether that could be a result of some kind of pelvic inflammation or endometriosis. It seems too far away to be related, but then pain/inflammation is a funny thing.

  • Maybe inflammation can be affecting the kidneys. Endo seems to cause a lot of inflammation.

  • @crossrabbit

    I don't think that you should rule out the effect of Endo on your other organs, or even your bones. Keep pushing for an answer, don't let the doctors just say they don't know. The information is available! I always had horrible pains, IBS, headaches & other symptoms, but things got really bad when I came off of BC pills after 8 straight years. The periods were still, heavy & painful & everything horrid, but I did not have an extended tummy. When I ditched the pills, after ending a long-term relationship, I noticed my tummy getting enlarged. I also started blacking out during period time, the bleeding got worse & I was a mess come period time. I went to a GP & he was the 1st doctor to recommend an ultrasound.

    The ultrasound indicated a fibroid 5 cm in diameter. I had 3 gynae's recommend surgery & I learnt that I had infertility in the worst way. A male gynae looked at my womb & said 'you are one of those women will find it difficult to have children...if you ever have any at all'. When I asked why, he said my womb was bulky & that I would probably need surgery. That was it, not other explanation. I was devastated.

    I had the surgery in 2005, at age 28. When my former gynae did the operation, she said that the growth tissue was not fibrous- like a fibroid should be, by soft tissue. She also said that it was found 'extensively throughout the womb'- I am guessing that this was diffuse Adeno- from my current understanding & the 5cm growth was the focal Adeno. She sent the tissue for biopsy & the histology report came back as Adenomyosis.

    Now, it has been 11 years & I am 39 & I have decided to have a hysterectomy. The growth is back- 5cm again (btw- my current gynae says that it is still called a fibroid) & the pains are getting bad again, along with the other symptoms. I was not cleared for IVF, so I just had to accept that I would not bear children biologically.

    This condition has changed my life, I am more understanding when people are having a hard time, but it has made be dependant on my parents & my bf as I cannot work. I have no finances & my education is not being used. My social life is also affected as I have to plan events around my period. The Traditional Chinese Medicine has helped to manage the pain, but as I said, the focal growth is back, so I have made my decision. I hope you get some answers & if you do an alternative pain/health management I say go for it! All the best!

  • I also experience pains outside of my menstrual cycle and during which don't seem to follow any sort of pattern but your description of the attacks of feeling really ill are what I occasionally have - I have had them about 3 times over the past year, every time at night. I had chest x ray, ecg and bloods last year which were all normal so I really don't know what it was. I have mostly cut out alcohol as my 1st 'attack' happened after I had been drinking and my doctor thought it was supra ventricular tachycardia but I haven't been diagnosed with that officially. I had one on Saturday night and I was also in a lot of pain around my stomach, pelvis and lower back. I'm currently waiting for my referal for a 2nd opinion as lap in Jan found nothing!! I hope that your gynae can find out what is wrong, would be interesting to know what the sudden attacks of feeling so poorly are xx

  • It's weird that you got the rapid heart thing as well... I had loads of tests the first time it happened (I also passed out), but all they found were elevated white cells. Whatever else happens, I always get the racing pulse. Feels like being injected with some kind of weird poison. Sorry to hear that they didn't find anything during the lap... must be frustrating!

  • Do you get jaw pain and swollen gums too? I've hear that can be part of cycle-related inflammation

  • That's weird, when I was in hospital the first time I did get really intensely itching teeth/gums... not swollen up though. It was quite a weird sensation!

  • I know this so an odd question since you are checking for endometriosis but these symptoms aren't lining up with your cycle which could mean another issue. Feeling ill with loose bowels is often a sign of bowel disease. Although endometriosis can cause damage to the bowel.

    Are you using an app to tract your cycle or are you checking your discharge, you can ovulate before or after the given time on an app, the only sure way of check is vaginal discharge.

  • Hiya, yeah I've been checked out fairly thoroughly for bowel disease and nothing has come up. Not using an app, I just mean that my symptoms don't really coincide with the regular monthly cycle (mine is quite regular) or with period pains, it seems to have no pattern to it. They just found a haemorrhagic cyst on my pain-free left side which could 'possibly' be an endometrioma but it's all a bit vague... I am not convinced that it's endometriosis either, but at the moment there's not much else to go on!

  • I don't mean bleeding I mean discharge from ovulation. With endo it's a waiting game and there's a possibility you've had no symptoms till now and their just bowel related (it happened to me in febaury, I had diahrria before then and now I'm I have chronic pain)

  • My pain throughout theonth never seed to.br cycle, apart from the actual period itself being my worst time, horrendous pain, have they checked kidney on scan, the first thing the docs found with me was a kidney stones, not that I was getting any pain tgere,

    Are you under a bsge specialist centre, if not go back to gp and get a refferal to one, look online at tge list of centres,

    I was diagnosed with endo and adenomyosis, my legs hurt often all the way down, and I often felt ill, just yuk,

    I'm still in pain after excision and a hysterectomy and am now seeing a interventional radiology for pelvic congestion syndrome,

    Xxx

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