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firewatcher

Eds And Heavy/prolonged Periods

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Is heavy or prolonged bleeding during your periods normal for EDS? I've had my period for 40+ days now. No fibroids, no PCOS, no cancer, no explanations. How do you stop this?

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I am a bleeder. Years ago before technology available the hemeoncologist diagnosed it as Von Willebrands. It was only recently that I had cardiac specialist who knew exactly what it was (rather new technology). I have EDS III (and maybe classic or mix--seeing geneticist in couple of weeks). My EDS was not dx's at time of my menses. I would have to go in to get injections from gyn to stop hemorrhage (I have Delta Granule Storage Pool Deficiency). EDS is faulty/lax collagen that affects every lining of every organ structure and eyes and skin, and even the vasculature.

That being said, my gyn wanted to put me on 'hormone pill' to regulate my menses better. I would go for 20 days (heavy) stop maybe 10 days (if lucky) and start back up again. That was my 'cycle'. Before trying the hormones, I went to endocrinologist to find out why a hormone problem (if I needed hormones by gyn) before taking anything. Seemed with blood work and CT scan, I had pituitary tumor (benign). According to my hormones they ran, they were so low I should not have menses at all (guardian angel watching over me).

Women can have metromennorhagia who do not have EDS. If your gyn isn't getting any answers, perhaps it''s time to see an endocrinologist (doctors who specialize in all the hormones of the body). I was probably the first and last patient this endo had seen, as he looked so surprised at me when I told him that I was there b/c of the 'periods' (they are more used to thryroid, diabetes, growth hormones). But I was so glad I went. It was never suggested by gyn so I sought one out on my own (nobody close to where I lived either).

I don't know your age but cycles can get all mixed up as you enter perimenopause. But I would definitely keep with it at gyn + or endocrinologist.

I wish you the best.

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I already see an endo and I have labs drawn tomorrow. He's told me that I've been in perimenopause since the age of 30 (I'll be 40 in two weeks.) Up until this period, they had been getting progressively lighter and irregular. This one just won't quit! I'm already on dDAVP for partial DI, but it makes no difference in the bleeding. I've come across several anecdotal stories on heavy periods and EDS, and this is suspected but unconfirmed. I have my docs stumped as I feel like I'm slowly bleeding to death. :(

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I'm confused. I see you are on Estratest. I read up on it and it is estrogen and testosterone. If you have a uterus, where are you getting progesterone from?

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I discontinued the Estratest when the Ob/GYN thought I might have fibroids. I was put on it initially because my hormone levels were so low. The only hormone that WAS in normal range was progesterone, so he felt safe in prescribing unopposed estrogen. I've also had quarterly blood draws to check estrogen levels and they have always been at low normal on Estratest. I stayed off it in hopes that the bleeding would stop, but it hasn't.

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We tried that when I first started the Estratest, but it never had any affect on my cycles. There is some wonky pituitary thing going on.

The only real difference lately has been laxity in my pelvic ligaments, so much that my pelvis is separating...thus my EDS question.

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I've always had heavy/ abnormally long periods, bleeding during pregnancy etc. Trying to use various hormones to control it only made it worse. Didn't have fibroids. The gyn was talking about doing an ablation but then found an ovarian mass and said it would be best to do a hysterectomy while they were in there given the LONG history of abnormal bleeding.

Reading one of Dr. Grahame's book on hypermobility syndrome he says this is very common. He says women should still be worked up for Von Williabrands as the two conditions can be coexistent but says that most often it's the hypermobility that makes us bleed so much.

Vitamin C has been helping me not bruise so much but didn't do much to help with the abnormal bleeding when it was happening.

Sorry you're dealing with this on top of everything else you have going on. It's a major drag!

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I had that too, during perimenopause, BUT it ended up being a HUGE fibroid. In the absence of that, you need your heparin levels checked. Folks with MCAD (You're hyper POTS- could be you???) can have high levels of heparin. It is one of the mediators released during mast cell degranulation and it causes excess bleeding- duh :rolleyes:

Sorry, Jennifer. Hope you're not anemic too.

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Yea, thinking of anemia, I finally mentioned why I began the thread "Birth Order". I had read some stuff on hemoglobin being involved in collagen synthesis. I linked the article and my "theories" on all that.

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I don't know yet about the anemia. I know I had a very high RBC and hemoglobin due to plasma volume deficit before all this happened. Once I stop bleeding or get to a "normal" hydration status, I probably will be. No idea on the heparin either, no one is doing any testing. I will be calling my endo tomorrow to see if I can move the appointment up...this is awful!

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I did not have fibroids either, but did end up with hysterectomy after 3 more years of these profuse prolonged bleeds still persisting after transphenoidal hypophesectomy. I was 28 at the time. They did find endometriosis on the ovaries and uterus. They removed 1 ovary and I always had big problems with ovarian cysts. Probably is connection with vascular uterus and poor connective tissue.

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My OB/GYN told me he suspects my pituitary is shot and my ovaries are just squirting what few hormones I have without direction. I'm truly hoping that this isn't the case. Maybe I'll know something soon.

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I just stumbled across this while researching something else:

DDAVP -- This medicine is a synthetic version of a hormone called vasopressin, which stimulates release of von Willebrand's factor and helps improve blood clotting. It comes in three forms: nasal spray, pills, and injections.

If you are still on DDAVP, that is pretty alarming....it is GIVEN to promote blood clotting. Seems to be having the opposite effect on you :unsure:

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I just stumbled across this while researching something else:

DDAVP -- This medicine is a synthetic version of a hormone called vasopressin, which stimulates release of von Willebrand's factor and helps improve blood clotting. It comes in three forms: nasal spray, pills, and injections.

If you are still on DDAVP, that is pretty alarming....it is GIVEN to promote blood clotting. Seems to be having the opposite effect on you :unsure:

Julie,

I think it was DDAVP injections that the gyn was giving me to stop my monthly hemorrhaging. I would go 20 days off 7-10 and start all over again and put up with that for 5 years til the hyst + 1 oopherectomy. But I would get the injection after about day 12. After my hypophysectomy, I was hoping things would improve, but did not. L'scope showed decidual tissue--had endometriosis on ovaries and one ovary removed with large cysts (which would rear their ugly heads randomly). That seemed to improve except for occasional cyst now and then. The DDAVP did stop my bleeding--which was always good to see. But after I hemorrhaged several hours after a minor sinus surgery, DDAVP would not stop the bleeding and I broke out in hives. Still with the Delta Granule Storage Pool Deficiency that is the first line of bleeding (unless cryoprecipitate, platelets or leukocyte poor plasma would be warranted. So while it helped my uterus, it did not help with the sinus (but that was almost 30 years after the uterine stuff).

I had read a bit about this new diagnosis of Delta Granule Storage Pool Deficiency (formerly hemeoncologist called me Von Willebrands) and from my understanding, there can be different causes. If caused by a certain thing and you get platelets, your body can develop antibodies against platelets, so this could be very very bad. This hemeoncologist I'm to see on Wed. has clinical interest in bleeding disorders/platelet disorders, so I sure hope he knows enough about what to investigate. Perhaps it would benefit firewatcher to see a hematologist, too?

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Yes! I have extremely heavy, painful periods, and these symptoms started when I started getting POTS symptoms. Actually, when I was a teenager, I had my period for months at a time and had to go on birth control at 13 or 14 to stop it!

Now, I don't have anything nearly that constant, but I spot from ovulation until my period, and then I have an extremely heavy, painful period. My cramps are actually like full-body cramps during my period my doctor has said because I get incredibly nauseous and throw up and have diarrhea from all the prostaglandin in my body. I don't know if this is related or similar to what you've been going through, but I'm convinced there's some link between dysautonomia & this.

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We tried that when I first started the Estratest, but it never had any affect on my cycles. There is some wonky pituitary thing going on.

The only real difference lately has been laxity in my pelvic ligaments, so much that my pelvis is separating...thus my EDS question.

firewatcher,

If you're seeing endo and testing is negative, and getting little resolve with gyn, it couldn't hurt to see a hematologist with clinical interest in bleeding disorders/platelets. My Delta Granule Storage Pool test was actually ordered by the cardiology specialist in dysautonomia when I brought up my hemorrhaging. He knew just what it was (and he was correct). These dense granules inside the platelets release things that cause the blood/platelets to stick together but I am deficient in these dense granules inside the platelets. I would be iron def. anemic with hemorraging chronically (childbirth/menses) and over long period of time, but Hgb and Hct were within 'normal' as were platelet counts, PT and PTT.

A hematologist with this clinical interest might be able to get to the root of the cause if other things are R/O. My cardiac specialist at UTMC told me that it was one of its own lab staff who finally developed a means to performs a test for this. I would look to a hematologist affiliated with a research (University) center as they are probably more familiar in general.

best wishes through this miserable trek.

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Is heavy or prolonged bleeding during your periods normal for EDS? I've had my period for 40+ days now. No fibroids, no PCOS, no cancer, no explanations. How do you stop this?

firewatcher,

I'd forgotten about this question but did see hemeoncologist for my Delta Granule Storage Pool deficiency (have EDS III). He told me that the Delta Granule Storage pool def. is rare, (but confirmed by lab and not disputed). He added that this is seen in EDS ('that is also rare) (only I think it's one of those under-diagnosed zebras). Treatment would be what they'd tried with me before which helped as far as stopping the heavy menses (DDAVP) but since it didn't help in other episodes of hemorrhaging, he tells me to have platelets transfused before so much as a tooth extraction--the more complex the more platelets, and sometimes postoperatively, too. He gave me his card to carry so that if any treating dentist, surgeon or ER doc has questions as to treatment, for them to call him.

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