By Nicole on Thursday, January 04, 2001 - 08:21 pm:

hi, i know this has been asked and discussed before, and i apologize for that, i read about it already, but people dont always check older postings, so i am posting a new one... ok, I have HMS and EDS III. This is a question about periods. its been discussed before, about horrible cramps and things, i get pretty bad cramps, but not nearly so bad as what i have read others get, usualy a persistent pain, like a terrible stomach ache almost, and then sharp sometimes. I also have extremely heavy periods, that i thought i was anemic once they were so bad. I am a teen, so have only had my period for a few years. When i first got it, it was extremely regular, and extremely heavy. Now, its not regular, bleed for 7-9 days inbetween 3-5 week periods or so. to be honest, i am not very good at keeping track. Its heavy from the first day to the last, and very very long, so as i feel i am loosing alot of blood. what i usualy try for the cramps is a heating pad, but that doesnt work. i cant talke ibuprofin or any pain relievers such as midol because i cant mix them with my prescriptions i am on. medicine usualy doesnt even touch me anyway. are there any suggestions? just wondering. and i apologize again, because i know this topic has been discussed alot already.

By Nicole on Friday, January 05, 2001 - 04:43 am:

wow, i jsut would like to apologize, i jsut now noticed my question was repeated, many many times... i had some problems submiting it, i am sorry.

By Patty on Wednesday, January 10, 2001 - 03:58 pm:

So sorry about your bad cramps, Nicole. I think it goes with the territory to have bad cramps and heavy prolonged bleeding. I finally had a hysterectomy for it and haven't missed any of it for even one day!
I found that hot soaking baths and getting on the bed with my knees under my chest so my rump was up in the air worked the best. You'll have to figure out how to adjust the pillows around your head so your neck doesn't go out, though. I found that if I put my arms straight down by my legs it was best.
I can't tell you how glad I am that my daughter knows her cramps and heavy bleeding are part of the EDS scene. My mom didn't have a clue and I was not given any sympathy - "Go on a long walk!"
Best of all to you as you figure out what works best for you!

By Patty on Wednesday, January 10, 2001 - 04:00 pm:

PS, Nicole. How old are you? My daughter is 18.

By Nicole on Wednesday, January 10, 2001 - 07:16 pm:

i am 16.

By Vicky in england on Friday, January 12, 2001 - 09:22 am:

Nicole
I know that it is often a scary topic to have to discuss with the folks, and as I don't have EDS it might not even work, but I did used to get really bad periods; they were irregular and I would pass out and/ or throw up every month; until my doctor put me on the pill at the age of 16 which freaked my Dad out! but really worked; I am now 21 and I have only had mild period pain at times of stress like exams, but nothing I couldn't cope with. Hope it helps and if it doesn't have a big hug from me next month!

By jane on Monday, January 22, 2001 - 11:55 am:

I don't know if there's a link between EDS and
menstrual probs, but I have had both. I had 7-10
day heavy periods with cramps so bad they'd keep
me home from school and occasionally made me
vomit. The only thing that improved the situation
was birth control pills. I still get the cramps
but only 1-2 days and not nearly as bad. The
whole thing is over in 4 days. If you have a good
relationship with your parents about these sorts
of things, maybe you should discuss the pill
option with them? Good luck.

By Patty on Tuesday, January 23, 2001 - 08:20 pm:

Hi Nicole. I've been unable to get to this site for a while. The birth control pills would be an option, but I am the one in 100,000 who gets blood clots in the legs from them. That is life-threatening - in fact, I shouldn't be here today! Be very careful with them. A good health food store would have some herbal remedies - combined herbs to help out. While it may not solve the problem, it should help.

By Vicky on Wednesday, January 24, 2001 - 07:24 am:

Nicole;
Following on from what Patty said; I had a family history of deep vein thrombosis, but there is a blood test to check whether you are at risk. I was ok even though my mum's twin was hospitalised with them. But I do agree, be careful; it is a responsibility in many ways, if you know what I mean! I really hope you have a good relationship with your parents and can discuss it properly; if you don't though, or you just want a chat, email me whenever; the anonimity can help cos it can be a bit embarrassing. Big hugs Vicky

By Kristen on Friday, June 08, 2001 - 05:35 pm:

I've actually never been here, but recently have had female problems with my cervix. About 5 monthes ago I started birth control pills and it's been almost heavenly for me. Growing up I had very long heavy periods, I'd bleed for 7 days and the day before my period I would always be so tired I couldn't move and the cramps were just unbearable. Now, I only get cramps if I'm really stressed out. Since i've been on the pill I've only had one bad experience and that was at a really nice restaurant in New Orleans (very sad!). I'm on Mircette which is supposed to be a really low dosage of hormones so if you are younger and your parents understand, it shouldn't be a problem.

If not as someone suggested curling up with your knees or with pillows under your stomach does help. My period has always been associated with back pain, does anyone else find that?
Thanks,
Kristen

By Barbara on Thursday, July 12, 2001 - 03:48 pm:

According the a Survery of Patients with EDS, published by the Ehlers Danlos National Foundation, OB/GYN problems are common for EDS types I and II (now combined and called "classical" type EDS) Click the link below for more information.

http://www.ednf.org/articles/survey1.htm