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IBS, PCOS, EDS, autonomic dysfunction and really bad periods..

2 replies

Becca19962014 · 30/11/2019 22:02

IBS = irritable bowel syndrome
PCOS = polycyclic ovaries
EDS = Ehlers danlos syndrome (defective collegen throughout entire body effecting everything).

So for the last few months I've had periods every month. They've been really bad. I've never had periods every month. Ever. I'm mid 40s In fact prior to about a year ago I'd have three or four a year and, they were horrendous, would last two weeks at least and yeh not good but a couple of times a year I could cope with. This? No.

So now I'm getting them every twenty eight days AND ovulation issues (pain and spasms) days 12 to 14. Like clockwork. But what I'm also getting is really bad pain and severe spasms in my bowel - severe as in you can see my stomach spasming. I'm not thin, I'm very fat (there are medical reasons for that), I can't really describe how awful or scary it is. But those spasms are so bad they are triggering me to collapse due to my autonomic issues. My bowel spasming all the time is meaning it's becoming effected by the EDS as well so chances of blockages high.

My GP was really happy my periods were suddenly fine. Until I mentioned I'm having so many problems. She contacted my specialist in London who said it's very likely the ovulation pain is connected to the EDS and possibly that's caused the PCOS - I've a lot of scaring on my ovaries from the few periods I've had in my life and in the last 18 months I've found old scars elsewhere on my body coming open for no reason though I've been told it's my EDS and stitches not being done properly at the time (my EDS is considered to be life threatening now as my throat has partially collapsed).

So, is there anything that works on spasms? I can't be staying in for half the month because the spasms mean at best I become severely dizzy at worst unconscious!. The pain I get isn't taken care of by my meds but there's no alternative I can take (my EDS means I react badly to a lot of medications e.g. The pill I was given (different types) for PCOS I was really ill on because my hormones instead of being controlled went through the roof.

I already take mebeverine and cannot tolerate any form of mint at all - it's a trigger for my ibs to flare. I tried some gel stuff from the pharmacy but despite saying there would be no side effects for me there were so I had to stop taking it (made me sick).

Sorry this is long and complex but wanted to give all information. I'm going through a hard time as well which I know also effects my ibs.

Any suggestions welcome.

OP posts:
Ginfordinner · 30/11/2019 23:30

Buscopan is an antispasmodic. I have it for IBS, but a dotor told me it is good for all types of muscular spasms.

I'm sorry you are having such a horrible time Flowers

Becca19962014 · 01/12/2019 10:46

Sadly it looks like I can't it because of my autonomic disorder it's not recommended. I'm surprised to see it saying that in the bnf to be honest as its not a particularly well recognised condition in the uk!

Thankyou for the suggestion though!!

I do take mebeverine for cramps, I dread to imagine how bad it would be without it!

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