By Robyn on Friday, June 02, 2000 - 12:54 pm:

Posted by Robyn on May 29, 2000 at 12:39:47:

I have EDS type III/Hypermobility. I have horrible cramps with my period just about every month. The pain gets so intense at times that I literally throw up. I also have heard that women with EDS tend to suffer more pain with their periods than the norm. One note... I did have lap surgery last summer and Endometriosis was found and removed. I am aware that Endo can cause pain also. I was just curious if there is anyone out there who does not have Endo but still has had problems with their period because of EDS? Your input would be much appreciated.

By Johanna on Friday, June 02, 2000 - 12:54 pm:

Posted by Johanna on May 31, 2000 at 13:13:25:

In Reply to: Menstrual Pain and EDS posted by Robyn on May 29, 2000 at 12:39:47:

HMS (so far)
Horrible cramps, tried all kinds of hormone-stuff from the doctor, none of it really helped. I also bleed very severe for one week, and a little for the rest of the month, it never really stops. GP doesn't care much.

By Pam on Friday, June 02, 2000 - 12:55 pm:

Posted by Pam on May 31, 2000 at 23:36:17:

In Reply to: Menstrual Pain, severe bleeding posted by Johanna on May 31, 2000 at 13:13:25:

find a new GP

By Pam on Friday, June 02, 2000 - 12:56 pm:

Posted by Pam on June 01, 2000 at 06:39:51:

In Reply to: Re: Menstrual Pain, severe bleeding posted by Johanna on June 01, 2000 at 03:39:34:

Unbelievable! Where do these people come from? Being incompetent is one thing if it only hurts yourself, but when you're dealing with someone else's life and health it's unforgivable.

By Pam on Friday, June 02, 2000 - 12:56 pm:

Posted by Pam on May 31, 2000 at 06:18:55:

In Reply to: Menstrual Pain and EDS posted by Robyn on May 29, 2000 at 12:39:47:

EDS is still undiagnosed in my family, we've just received a diagnosis of HMS in my 15 year old daughter. However, the more I read the more I suspect EDS in myself and both my daughters.

I can't really answer your question except that my older daughter (almost 17) and my sister have both experienced horrible menstrual cramps and vomiting such as you describe. My sister also had endometriosis (spelling?). Let's keep each other posted as we get more info.

By Michaela on Monday, June 26, 2000 - 05:32 pm:

Oh, boy I understand the not understanding doctor.
though I did find a wonderful woman doctor at university. I was finally allowed to go on the pill to stop the pain at age 17, and all I can say is Halelujia! My cycle was twice as long as it should have been and the cramps started two weeks before bleeding. And then .. well cramping from knee to breast is no fun. Neither is making excuses to leave school. Everytime I said to myself, this time I'll stay in class, this time... but no. I had two days at home each time.
So anyway, this doctor at Uni said, you're on the pill for medical reasons, well in that case you should definatly be be getting it on subsidy. so instead of spending 30 dollars for a 6 month course, I was paying 3.
Then I spoke to a nurse who told me it was ok to skip a period or two using the pill, as it's just like the hormone balance in pregnant women.
I read up some more, and found out that the sugar pills are only there because male researchers believed women *wanted* the bleeding. Duh!
Anyway, I've been able to not have my period for the last three months, and it is simply the most wonderful feeling of freedom, and I don't feel anxious at the pain awaiting me just around the corner....
As for the risks of blood clots, it increases the chance of getting them from one in 30,000 to one in 10,000, so I don't feel it much of a risk when put in conjuction with my blood that simply doesn't clot well and my general wellbeing.

Most people do not know of the use of the pill to prevent dismenorhhia, but it is an option to discuss and see if it is right. I know someone getting the injections, and it is the same as skipping the sugar pills, and it saves a lot of money on sanitary goods....
But again, do discuss this, I'm not an expert, this has simply helped me live like anormal person.

By Nick on Monday, July 03, 2000 - 08:33 am:

I have come off the pill now, it caused too many migraines, but I was told by my doc that I could take 3-4 months in a row, no problem. He did advise stopping them as normal once in a while, just to be on the safe side. I have doen this for 3-4 years with no side effects, it wasn't the way I took them that casued the migraines, I just became intolerant.
Hope this helps, its your body, do what works for you. My theory was "Im in enough pain already without having a period I don't really need each month!"

By Barbara on Sunday, January 14, 2001 - 06:41 pm:

I know of several people with EDS who have had endometriosis which can cause the symptoms you describe. I have not seen any studies on the connection between EDS and endometriosis or other menstrual problems.

During your menstrual cycle, the hormone "relaxin" is released. This hormone is the one that allows the hips to move during childbirth. Unfortunately, it causes the whole body to become more lax and unstable during your menstrual cycle. For me, that equates to more sublux/dislocation during my period.

By Margareth on Sunday, May 05, 2002 - 03:09 pm:

My period was always pretty bad but the past year it has been the worst ever. I bleed for at least 25 days a month. I saw a specialised gynaecologist and he told me he gets a lot of people who have both EDS/HMS and troublesome periods. We are looking into what to do now.
I am confused. I was supposed to have HMS because no skin was involved. But if my uterus is 'poor quality' too, how can it be 'just HMS'? Will there be other organs affected? Should I worry?

Barbara, or anyone else who knows, exactly when in your cycle relaxin is released? If I bleed for like 25 days a month I could perhaps be producing relaxin for 25 days aswell...
I hate the way my mind starts thinking: what if my hypermobility is caused by my hormones being so messed up all the time. If it is my abnormal cycle, if it is the relaxin, maybe it is curable, maybe the relaxin can be stopped. What if...
Probably not, huh. Probably I just have fragile tissue in my uturus too and that's why I bleed so much. Probably I am stuck with this hypermobility forever and with the bleeding too for that matter. Probably I will keep on searching for answers and never finding them. It will all be futile.
Still, everytime I get a thought like this I keep on hoping. Why? It only hurts. Don't I hurt enough as it is?

Rispondimi!

By Lucretia on Wednesday, August 25, 2004 - 08:59 pm:

I was wondering a lot about this too. The more information, the matter!
Background: I definitely have serious hypermobility and probably EDS III (gum problems, marked-up, stretched out skin, major coordination problems as a child, etc.), but this hasn't been confirmed genetically. Since I was 11 I've suffered EVERY MONTH from periods with incapacitating pain. I'm 23 now. Every test I've had-including a laparoscopy to search for endometriosis-came out normal, and every treatment has failed-pain medication I either can't take due to life-threatening side effects or I'm immune to, birth control pills did absolutely nothing, trying to suspend my periods with them has failed since I can't tolerate them at the dose I'd need to do that (low doses only cause me to bleed for weeks instead), etc. I, too, have been given the prostaglandin (a.k.a. relaxin?) explanation, but from the research I did I doubt that this is the cause of the pain since it doesn't act the way a typical case of menstrual cramps does.
So I started wondering whether something about EDS itself could cause such pain.
as for what to do, I am now on a campaign to convince the doctor to give me an endometrial ablation (a way of cauterizing or removing the lining of the uterus). one warning, though: this treatment is NOT for anyone who might want kids in the future.

for Margareth: EDS can get worse during certain times of the month, but hormones do not cause it or hypermobility; they are genetic conditions. As for the prostaglandin, most sources say it is released a couple of days before one's period and peaks 24 into it.