Menstrual History, Please!

[sue1234]

I can say for myself, my menstrual history was perfect(no bcp, absolute normal cycles) up until perimenopause:

age 37-39-- increasingly flooding periods, every 3 weeks(didn't take any iron, didn't even think about it, dr. did not mention it!)

age 40--large cyst on one ovary, had it removed, along with uterine ablation

age 43-now--other ovary with off/on large cyst, but tiny, normal monthly bleeding r/t ablation

age 46-now--once or twice a year regular bleeding(guess ablation didn't completely stop it!)

age 49--FSH up in 50s, told menopause, HOWEVER, at the same time having MY YEARLY PERIOD! Ultrasound shows normal tissue buildup, so doctor says not to be concerned.

They say average age of onset of FMS in this story is 45--right in the middle of perimenopause. My POTS started when I was 46. Low blood volume r/t irregular menstrual cycle? Off-kilter hormones, more than average person?? Who knows. But we can still look for common threads. I know the guys don't apply here, but the majority of, at least FMS, is in women.

So read the article Ramakentesh posted and see what it says.

[Dawg Tired]

Regular periods starting at age 12.

BCP from age 15 - 25.

Periods painful from the start to the extent I actually started drinking for pain relief about age 14. My mother said the pain was "normal" So I thought it was.

Age 18 I was told I "probably" had endometriosis.

Had a miscarriage at 19.

Ovarian cyst at 21 and through laparoscopy endometriosis confirmed.

Miscarriages at 29, 30, 31. Had a live child at 32.

Hysterectomy and bilateral oopherectomy at 36.... RELIEF!!! I woke up from surgery so much more pain-free than I had been in years. Pain relief was such that I took no pain meds for the surgery.

On HRT (Estradiol) since.

But CFS still there.

[kayjay]

Regular Very Painful periods even as a teen. 2 children. Then bleeding between periods for last 6 years or so. Cyst removed at 35. Diagnosed with endometriosis. Still have bleeding between periods and regular HEAVY cycle. Ablation recommend for me but i didn't want to do it. Oh I 'm 36 started period around 13/14years old.

[juliegee]

Sue-

Where can we find Rama's article? I want to read it. I will comment on my history after, but like you, perimenopause made EVERTHING awful I'm relatively level on a patch now & LOVING it!

Julie

[firewatcher]

Menarche at 13 (first migraine 2 weeks before)

VERY heavy, short (every 18 days) periods lasting for 8-9 days until BCPs at age 17.

BCPs from17-26: still heavy flow, but more regular, eventually cycled to only 4 a year because of the migraines.

Two children conceived within a month of stopping BCPs.

Stopped BCPs after second child (and husband's vasectomy) and my cycles slowly dwindled in length and flow, lost libido, etc.

Currently on HRT and loving it! My endo says that my normal cycle, while regular, is barely adequate in it's hormone production (estrogen, LH, FsH, and Testosterone.)

LH and FsH too low for menopause.

Sounds like a pituitary issue to me, but then I'm no doctor.........

[delphicdragon]

1st period at 15.

Immediately regular periods ranging from 25-28 days. For a bout 3 years periods were very painful and caused diarrhea- that's gone now.

Occasional irregular bleeding following stressful events (18 day period or skipped period)

On NuvaRing currently which ups my energy, 3 months on, 1 week off.

Basically it's been going on for 10 years every 28 days.

[Maxine]

Periods ran 2-3 days, only 12 hours of it being moderate to heavy, and it stayed this way from age 12 until my last period a couple months ago. I'm 50 years old and have no idea if I'm in menopause, but I assume so because my periods have stopped then started again----sometimes gaining back my normal cycle. My symptoms of menopause seem mild, and hot flashes just seem annoying more then anything.

I don't think my cycles made my POTs worse, but it did increase my cervical/cranial pain, and caused more headaches. I notice some mood swings and having less patience, but maybe it's all the health issues and being tired of doctors---

Maxine :0)

[Mrs. Burschman]

First period 14. Very irregular from the start until began birth control pills at 15.

Went off birth control in college. Periods very irregular again. Skipped up to 10 months at a time.

Back on birth control. Regular again.

Worried about increased risk of stroke because I have migraines with auras. Went back off. Back to skipping months at a time.

Diagnosed with PCOS (even though I have none of the symptoms besides cysts and irregular periods.)

Started on metformin (even though my insulin levels are normal.) Periods now regular.

Never been pregnant.

[juliegee]

Still looking for the original article. Can someone direct me, please???

Thanks-

Julie

[poppetkazutaka]

I've had "normal" periods up until when I started birth control at sixteen. They were extremely painful (I would curl into a ball and cry and beg for pain killers), with clots, and I was diagnosed with 'dysmenorrea' (I might be spelling that wrong) and after three years of the pills not working, stopped taking them. Then I had periods for three days at a time (first day I would go through two heavy pads and then I would spot), 28 to 35 days a part, sometimes skipping months. I never kept track because I wasn't trying to get pregnant and I wasn't dating.

Earlier in the year I had a scare where after my period was over, I was assaulted by painful cramps right after sprinting to the car. I had to lay down and it was the worst I had ever felt. My guardian angels told me to "hurry, go to the bathroom and bear down as hard as you can!" and I heard two plops. I wiped and got up, and there were three two to three inch blood clots. It was bad. So I got back on birth control later in the year because I was tired of all the symptoms and clots. I now have regular periods, very light and with no pain for five days at a time.

So nothing too serious. I do have PCOS though, which means I have a busted left ovary that shoots out half-formed eggs that are not viable, and a right ovary that has somewhat of a chance of doing the same. I have had multiple cysts on the left to the point that we couldn't see the ovary beneath and one that was at least six cm in size, and for reference the average virgin adult womb is four cm in size. Yeah.

[heiseygirl]

i always had trouble with my periods started in 6th grade bled so bad my mom had to call the dr. I do have a bleeding disorder Von Wilebrands similar to hemophilac. Always had very bad cramps. Had my 1st daughter at 19. Had a cyst on my ovary removed @ age 25. Grew back to the size of a grapefruit with in a year. Had that ovary removed. Within 6 months i was pregnant with twins. A boy and a girl with one ovary. 4 years later had to have a complete hysterectomy at age 32. My blood count went down to 6.My other ovary was covered in cysts. We only found out about the bleeding disorder during hospitalization the 2 nd time from what we know now is pots. Knowing this might have saved me a lot of problems. My periods were extremely painfull also and i had a lot of clotting.

[EarthMother]

Menarche at age 12, by 13 I was missing school at least once a month with horrendouse cramps. By 16 I was on birth control pills to reduce the uterine lining. Early twenties diagnosed with endometriosis, though I think this was speculation rather than actual testing on the part of my OB/GYN. Aside from taking time out to have three children, I remained on birth control hormones until one year ago. I am currently 46, presumed permenapausal and experiecing all of the joys of flooding and hot flushes associated with the transition.

[Broken_Shell]

Menarche at 13. Then very close together, but regular periods every 19 days - lasted 6 days with moderate to heavy bleeding. Amenorrhea began after onset of dysautonomia at age 21. Could not tolerate birth control pills, but put on HRT due to diagnosis of osteoporosis at age 22. Cycles resumed at age 26 and have been wrecking havoc on my life and autonomic symptoms ever since. Bleeding is also heavier than before with a lot of clots. Been trying different hormone combos for the past year to try and shut my cycle and hormone fluctuations back off, but no luck yet. Things have kind of gone off the deep end and I have had near continuous bleeding with everything I have been on, and I am now actually experiencing really fast cycles of autonomic and hormonal symptoms and bleeding every 10 days that lasts 7-8 days like a heavy period. Hope that helps. I'm curious to know what article you are referring to. I know that they list "menstrual cycle influence on POTS" as a future research interest at Vanderbuilt. My mom had endometriosis. I have been told that I may have it as well due to the pain and that I experience related to menses.

~ Broken_Shell

[pat57]

my blood pressure dropped a lot during perimenopause, came up a lot after after menopause. This is documented by my Dr. visits.

[tinkerbella]

I can't find the article either but I'm assuming it may have to do with low blood volume and being anemic. I was sick long before my periods wich started in my teens with migranes severe heavy bleeding all my life even when I foolishly went on the pill. I had a ectopic preg. where I was told after that I nearly died on the table due to major loss of blood, pie wedge taken of ovary, and tube bust and taken out. Was told I would most likely never have children.

Several years of heavy periods later and surgeries to try to fix the problem as I now had endrometriosis and a belly full of adheasions. Finally 6 years later I was blessed with a bloody birth thinking that all woman must bleed when giving birth ad then the doctor moved in and took my son by forceps as my placenta had torn. I then has 3 more births all very close together as the doctors didn't give me any promises that I would be able to continue to have more.

Inbetween all of this I found out that I most likely have Von Willandbrand's as I'm a bleeder but insurance stopped testing after about 8 months due to catching it in lab work is tricky. Going on history alone the doctors felt I have it.

Used birth control pills as allergies to everything else. I wish I never took them!!!!!

I started in the spring of 08 to have post meno bleeding so bad that my iron blood level drooped to 4 and I now had pre cancerous cells. I was put on hormones that made my pots WORSE than ever... I also had another cyst. I needed surgery and no one wanted to really touch me as my mom at my age had problems waking up from antheasia and they thought she was going to die and called us all in to see her when we were kids.

So I had a deep D and C and everything looked ok for now. The cyst had dissapeared and is now back again along with the bleeding. I just had another biospy that came back normal. The ultrasound was almost normal although the linning is building up agin. This time we think it's the florinef. If I start to bleed out of control I need to get to the doctor otherwise, I'm safe again till next year from the cancer cells.

[heiseygirl]

I can't find the article either but I'm assuming it may have to do with low blood volume and being anemic. I was sick long before my periods wich started in my teens with migranes severe heavy bleeding all my life even when I foolishly went on the pill. I had a ectopic preg. where I was told after that I nearly died on the table due to major loss of blood, pie wedge taken of ovary, and tube bust and taken out. Was told I would most likely never have children.

Several years of heavy periods later and surgeries to try to fix the problem as I now had endrometriosis and a belly full of adheasions. Finally 6 years later I was blessed with a bloody birth thinking that all woman must bleed when giving birth ad then the doctor moved in and took my son by forceps as my placenta had torn. I then has 3 more births all very close together as the doctors didn't give me any promises that I would be able to continue to have more.

Inbetween all of this I found out that I most likely have Von Willandbrand's as I'm a bleeder but insurance stopped testing after about 8 months due to catching it in lab work is tricky. Going on history alone the doctors felt I have it.

Used birth control pills as allergies to everything else. I wish I never took them!!!!!

I started in the spring of 08 to have post meno bleeding so bad that my iron blood level drooped to 4 and I now had pre cancerous cells. I was put on hormones that made my pots WORSE than ever... I also had another cyst. I needed surgery and no one wanted to really touch me as my mom at my age had problems waking up from antheasia and they thought she was going to die and called us all in to see her when we were kids.

So I had a deep D and C and everything looked ok for now. The cyst had dissapeared and is now back again along with the bleeding. I just had another biospy that came back normal. The ultrasound was almost normal although the linning is building up agin. This time we think it's the florinef. If I start to bleed out of control I need to get to the doctor otherwise, I'm safe again till next year from the cancer cells.

[heiseygirl]

Bella Mia when were you tested for Von Wilebrands? I was tested about 4-5 years ago by my hematologist and it came back that I have it. The interesting thing about Von Wilebrands is that I need to have an iv of ddavp when ever I have a procedure done. I would check into getting tested again as there was no problem finding out that I had it.

[ajw4790]

I think this is the article/thread that is being referred to...

http://dinet.ipbhost.com/index.php?showtop...mp;#entry122993

[Kathy_Ireland]

I think that this is the part of the article from Ramakentesh that Sue was refering too :

The CDC?s Woes Continue: Gynecological History in Women With CFS: A Population Based Study in Wichita, KS. R. Boneva, J.S. Lin. E. Mahoney, et. al.

The CDC?s presentation at the 2007 Conference wasn?t especially noteworthy but their presence at the 2009 bordered on pitiful and gave weight to Kim McCleary?s report that the program has badly stagnated.

This was one of three studies presented by CDC researchers. This study was from the Wichita cohort, which means the data for it was collected sometime around 2001(!). It?s not that this is a bad study; it?s just that it does little to move the field forward in a significant way. And if anyone should be moving this field forward, it should be the CDC given that their budget is several times higher than any other research group.

It?s doubly unfortunate since the broad subject ? why women get this disease more than men ? is an important one that?s hardly been touched on. Dr. Boneva wanted to know if women with chronic fatigue syndrome differ gynecologically from healthy women. Since the disease peaks at about 45 in women ? just as they?re entering menopause ? it?s possible that hormonal changes help to trigger it.

There?s much ado about ?stress? triggers in this disease but If ME/CFS was the result of accumulative stresses building up over time it should become more prevalent the older we get. Instead it peaks in women at just the time their hormonal systems are undergoing a massive change. Throw in Dr. Moorkens' finding that pregnancy kicks off the disease in a significant percentage of women and you have to start looking closely at the sex hormones. In fact an earlier study suggested that estrogen availability may be different in women with this disorder. Were estrogen levels different in the women in this study? If the CDC knew, they weren?t telling yet; according to the abstract the CDC did measure sex hormone levels in this group but that finding did not show up in this report.

This study found several gynecological abnormalities in women with ME/CFS: they entered menopause about five years earlier, more of them had had their ovaries removed and they were more likely to have had a hysterectomy. Oddly enough no questions were asked about the rate of miscarriage ? a seemingly obvious question in a gynecological study.

This was Dr. Boneva?s baby; she may have an interest in this particular subject and may have asked to mine this old dataset (She was apparently not with the program when it was collected). The study was interesting but it?s a decided secondary effort; it relies on old data, it?s not testing out new theories, etc. ? it?s certainly not the kind of study one would expect the largest ME/CFS research group in the world to highlight at an international conference. I

Is this right Sue ?

[potsgirl]

It seems as if several women here had their menses start at a pretty early age.

1st period: Age 11. Very heavy with a lot of clotting. 6-7 days. Went through 2 tampons/one pad every 3-4 hours on days 2-3. Lots o' cramping. Ugh.

Pregnancy: Age 20. Gestational diabetes. Son weighed 11.5 pounds at birth.

Age 21-now (47): BCP. Not only for pregnancy prevention, but also for heavy, long periods. Recently diagnosed with -3.1 osteoporosis of spine, will be going off pills soon and starting Fosamax.

In perimenopause since age 44/45. Gotta love those hot flashes!

Cheers,

Jana

[poppetkazutaka]

Yeah, I forgot to mention when I started, which was around age 11. I was also an early bloomer. I grew into my breasts and pubic hair around that time.

[tinkerbella]

Bella Mia when were you tested for Von Wilebrands? I was tested about 4-5 years ago by my hematologist and it came back that I have it. The interesting thing about Von Wilebrands is that I need to have an iv of ddavp when ever I have a procedure done. I would check into getting tested again as there was no problem finding out that I had it.

Hello heiseygirl,

I was tested about 15 years ago and the doctor tested me for a long time until insurance would nolonger pay anymore. He said in some people Won Wilebrands is very hard to catch in a blood test and handing me a script for pills to take in case of an accident. Then after much thought and consideration with all my allergies he said not to take them. He said he had another woman that it took several years to find it in her bloodwork . He was a hematologist. Sadly, he left and said don't take any meds that will thin your blood, but by your history alone I believe you have it.

Last year when I was bleedingl like crazy with my post meno bleeding they check my bleeding factors were off and I meant to go and have them checked. I was at Dana Farber Hospital in Boston, Ma. The decided that I had a virus of some kind but I continued to be sickish for till finally the dx of pots. I will get it checked out before I get my portacath put in. I'm still sitting on the fence on that one. they struggle each time 2 times a week trying to access my veins but I don't want one. I've had the appointment with the surgeon and he has not called me back. I'm sure he's read my chart and said, " no way I'm not touching her!" LOL :3

Back to all the pregnancy history. I was sick all through the nine months, but I was a happy puker as I was unable to have children for 6 years and was told to adopt... my story is above. I had been wondering lately if woman who are sick through their pregnancy are ones who are more like to get pots?

Wondered how many of us had a hard time with being sick with pregnancy?

BellaMia~

[juliegee]

I think this is the article/thread that is being referred to...

http://dinet.ipbhost.com/index.php?showtop...mp;#entry122993

THANK YOU!!! Yes, there is room for so much more research here. Rather than looking at gynecological/menstrual history; I think we may glean more if we looked at age of onset & HOW that relates to our hormonal stage. MY symptoms worsened horribly with perimenopause. Now that I am using a HRT bio-identical patch, I feel so much better. Seems like there's info that can be applied to treating female patients here....

Julie

[sue1234]

I'm sorry! I posted the question, then left town for 3 days, so missed the time line that y'all didn't know what article I was referring to. I see alot of bleeding, clots, and ovarian cyst issues from all the posts. I guess y'all that had it at a younger age had POTSy symptoms way earlier than someone like me that (no birth control) had perfect, every 28 day periods until I hit 40, then all h@ll broke loose. I personally was not able to handle bcp at perimenopause, and still in meno, as they made me way more tired and listless, and made my IBS more constipated. Thanks for all the stories, and maybe someday some researcher might see these answers and see a common thread, or a hint, at least.