Menstrating for 54 days already

[Ling]

Today is day 54 for me. I am sick of menstruating already. I saw my gyny on Saturday and he says I have a thin Endometrium and to be patient. I have taken two bottles of hormone tablets and no change. The pharmacist can't believe it has not worked for me. The pain is horrible and I am sleeping with a water bottle at nights. I have horrible clots and it is heavy this week. My gyny is desperately trying to get my body in to a cycle. I am on Tripha... at the moment. 3rd Pill make in 5 months. You all know I have Endometriosis but has anyone of you ever had such a problem? What is going on?

[corina]

Hi Ling,

I feel very sorry for you to have this trouble. And yes, I'm with you. I've been having menstruationproblems for about 10 years now. After my first pregnancy I got symptoms like I was starting menopause: very irregular and strange menstruations, hot flushes, etc. etc. After a few years I tried to get pregnant again, which didn't work out. I went to my familydoc and a gyneacologist and after some tests and having to take hormones I got pregnant. After this pregnancy I started to have the strange symptoms again and when I was 34 I did a bloodtest and was diagnosed with menopause. I couldn't believe it. My familydoc told me this was probably the reason why I couldn't get pregnant the second time. I didn't take any hormones because that made me feel very depressed and got on with my life. Last year (still having very strange, irregular longstaying or very heavy menstruations) I asked my doc for another bloodtest because I wanted to know how long this was going to last or it would maybe end soon. The result of that test was that everything went back to almost normal and I was no longer starting menopause!!! I couldn't believe it again. In may I saw an endocrinologist (for having POTS) and he also told me I was not starting menopause. About two weeks ago my familydoc sent me to a gyn again and I had an ultrasound of the uterus. The mucous menbrane seemed to be too thick and there is a little uterine myoma in it. I have to take hormones for 10 days now, do a bloodtest again and see him again in Januar. He told he than would probably look into the uterus and there is a chance of having to get the uterus out. What I found very striking was that he told me there are uteruses that "for some reason" live there own life and don't menstruate like the normal pattern. I asked my neuro if he knew it could have anything to do with the POTS because in my (our?) body (ies) there are a lot of "things" living their own lives. He never had heard of that before. Well, I hope with this very long story it might help you a bit. At least your not alone in this. What I'm almost forgetting: isn't there anything for you to stop menstruating? I once menstruated for 6 weeks and got something to stop it, because it isn't very good for you to have this for such a long time. Your even having this longer. Isn't your gyn worried? (I am because it's also bad for your POTS).

Well, wish you the best of luck and hope you will get some answers, I would advise you to talk to your gyn again but this is definately NOT normal.

Corina

[Ling]

Thank you for the support. I agree with you one hundred percent. If our bodies cannot regulate temperature, blood pressure, heart rate. Why do we believe that it can have a normal menstruating cycle? I believe we have allot to learn about P.O.T.S. At least we are all learning together. I have been giving medication twice from my gyny to stop the bleeding. I am even taking the whole pill packet at the moment. After my operation in July they wanted me to stop menstruating. Well long story short. This body is doing what it wants and not what any medication or doctor is telling it to do. Sounds P.O.T.sy to me.

I know the bleeding is not from Endometriosis and my Endometrium lining is very thin. For goodness sake I am only 26 and I don’t have any children yet. I just want one then my body can do all these funny things. I worry so about my lady parts. I need to use them and they are starting to act up.

But most of you fell pregnant so I know I must not worry.

[Guest tearose]

Hi Ling, sorry you are having this problem. You must be tired of it all. I can recall two separate times where my period seemed to be never ending. It was a combination of slow, mostly light, spotting, but it took about three months to finally settle again. I am relieved that you are under your doctors' care. I hope this will pass in a very short time. Everything IS different for us since our autonomic nervous system are so unusual!

Don't let yourself get too weak. Make sure you really trust your gyn! best regards, tearose

[Gena]

Ling,

I've had period problems all of my life. I also had mild endometriosis and fibroids. Whenever I've gotten to a point where the bleeding is too prolonged, heavy or just unbearable, my gyno has performed a D&C. I've had this twice, and basically it cleans out the inside of your uterus. Afterward, my body bounced back to a somewhat regular cycle for at least a few years and I would have much less bleeding during my periods. It was like starting fresh.

You may also want to avoid meats and dairy that have hormones in them. They are believed to contribute to endometriosis. I only eat organic...(but apparently that has rocket fuel in it now, so who knows what to eat! )

And with that much blood loss, get your gyno to check your iron levels. You may need a supplement while you're bleeding.

I hope you find answers soon.

[Jersey Girl]

I have had two D & C's since developing POTS. My periods are extremely heavy with painful, nasty giant size clots. My gyn told me it is expected that one's periods get heavier, not lighter before menopause and because of my age (52) I would guess that he is correct. I tried Alesse and Prometrium which only made me worse (hospitalized) and did 3 months of Lupon which stopped my periods for 6 months, but they came back worse than ever, so I'm not sure it was worth it. I don't know if the POTS made my periods worse or the periods make the POTs worse. There is defininitely a hormonal connection with POTS as 80% of us are women. Take care. Martha

[BuddyLeesWife]

Have they ruled out fibroid tumors? I struggled with severe periods and anemia for 9 years and had all kinds of tests, hormone treatment and surgeries. My last period was 90 days and similar to yours - I felt awful and I don't have dysautonomia so I can only imagine what it would be like in combination with that. In my case, too much estrogen which led to fibroid tumors was to blame 1) they enlarge the uterus 2) they each have thier own blood supply 3) one was positioned where it would not allow things to close off - all increasing the duration and severity of bleeding. The good news is that fibroids are benign, a high percentage of women have them, in most cases they don't cause any problems but when they do they are treatable. Just a thought.

PS - I also had 4 months of Lupron injections to try and interrupt my cycle but they did not work for me (even double injections did not work). Also, Lupron is temporary and puts your system into a false menopause (stops estrogen production) but the effect wears off when the medication is stopped and everything comes back. For me, the Lupron was to stop the bleeding long enough for my body to build up my blood supply to withstand surgery. Lupron has some significant side effects. Maybe things have changed in 3 years, but Lupron was used only as a temporary therapy.

PSS - The Dr. did put me on an iron supplement, I took Feosol which is available without prescription but should only be used under a physician's direction (too much iron is toxic). I also had to take a stool softener during that time because the extra iron makes things difficult.

[Guest GayleP]

I had bleeding for a year a few years ago. Finally my acupuncturist told me to get my OBGyn to test me for a fibroid. Why my OBGyn didn't know to do that is beyond me.

Sure enough I had a fibroid. Plus, I think I was starting menopause. There are several tests for Fibroids you should ask to be tested. Also, I don't know how old you are but you might also try to get your hormone levels checked (FSH) to see if you are starting menopause.

I'm sorry you are going through this. That constant bleeding can make you tired after a while.

GayleP

[DawnA]

Yes I agree you should get this checked out with your gynecologist. I can't imaginehaving my period that long. I would not be able to get out of bed. I hope you can find an answer for this sonn. Take care. Dawn

[geneva]

Ling, I would be willing to bet your cycle problems do indeed have something to do with POTS. At the onset of POTS my periods stopped completely and didn't resume for 14 months and then went back to normal. In the hospital the endocrinologist said I was definitely not in menopause due to lab work. I know that skipping periods would be an easier problem to deal with than what you are experiencing but I just wanted to add that I think POTS is possibly at the root of any menstrual irregularities once other things have been ruled out. The ANS is a very independent operating system and does what it wants!

I hope your doctor can find something to help relieve the pain at least.

[Guest GayleP]

Geneva,

There probably is a connection. I had brain surgery in 1995, then developed dysautonomia. Then at age 39 went in and out of menopause for 5 years. All the women in my family started menopause in their 50's so I think there is a connection to my early menopause and dysautonomia.

All my Drs said that it was not typical perimenopause and that they hadn't really seen a case like mine. Which makes sense becasue they probably never saw anyone else with dysautonomia before.

GayleP

[MightyMouse]

I remember being told a long time ago, before I went on an Outward Bound adventure--very physically and mentally challenging. In all the preparatory materials I had to sign off on and read, it was mentioned multiple times that female participants were expected to pack feminine care products--even if we weren't due to menstruate during the time of the trip. They explicitly stated that many women on the trip would menstruate as a result of the stressors.

Do continue to keep in contact with your doctor(s) about what's happening to your body--just to be sure that if it's something other than stress provoked bleeding, you get treatment.

Nina

[blackwolf]

Dear Ling,

Been there, done that, don't really miss it. I had a complete hyst. done in 1999. Boy was I glad I did it. I too had nasty long periods and even tried the shots, no luck. I hope you get some relief soon. And be sure to eat really good and take your vitamins.

Blackwolf

[Ling]

Thank you all for the advice. I don’t have any growths and my gyny just wants me to be patient through all of this. I am worried that you all mentioned early menopause. This will enviably affect my chances to have a child. Age and menopause age is very important. I once watched the most amazing show on Oprah about women in their 30s and gyn's who said they can wait. The menopause age is very important and the age of having children. This normally helps if you can speak to your mom about when she started. At what age did most of you start with the pre menopause problems? I am turning 27 in April no babies yet?