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Very long periods with or without BC. symptoms severely impact my quality of life

Age: Late 20s

Sex: F

Height: 5'9"

Weight: 145-155lb (fluctuates)

Location: Southern California

Duration: 15 years in total, but 5 years of this kind of bleeding breaking through BC

Race: Mixed

Existing relevant medical issues: benign ovarian teratoma (no Fallopian tube torsion, kept ovary in tact despite size), PCOS (suspected), hirsutism, androgenic alopecia, adrenal dysfunction

Current meds: Propecia (yes, aware of risks -- under close monitoring of a women's hair loss specialist), Spironolactone, Sertraline, Buproprion, Adderall, Clonidine.

Blood Panels: https://imgur.com/a/dA4gfOu

Okay, so:

I have had incredibly long and fairly heavy periods all of my life -- my flow has varied from extremely heavy to moderately heavy usually. My first few years of periods were irregular, but we were told that was normal when a girl is new to menstruation. Eventually, I had to be put on birth control at 14 due to how out of control my periods had got. I would bleed for 21-28 days at a time, have 3-7 days off, then start all over again. I became severely anemic and was put on the pill.

I've tried various forms of birth control over the years, and I've bounced around from a few different pill versions. The only BC that successful corralled my periods for the most part was the Depo shot, but it had other unsavory side effects that was no good with my hormonal issues and depression.

About 6 or 7 years ago I got an IUD. I won't count the first year as experiencing breakthrough bleeding, since my doctor said it can take a while for some bodies to get used the IUD. Problem is, I often had long, breakthrough periods -- that my doctor always tried to dismiss as spotting, but as far as I'm aware bleeding heavily enough to use 4-6 tampons a day is beyond "spotting." Beginning year 3, through year 4 of my IUD (when I finally had it removed) I was having incredibly long breakthrough bleeding -- with several instances of non-stop bleeding for 3-4 weeks during year 3 and 4-6 weeks in year 4. I finally got it removed because I did not see the point if I was going to be bleeding nonstop, still.

Then, I was put on the Nuvaring for a year. Loved it due to fewer generalized side effects, ease of use. But I was back to my old cycle -- 20something, sometimes 30something days on, a week or so off, back on again. I stopped Nuvaring about a year ago. Again, I didn't see the benefit of being on BC when my periods were just as unpredictable as ever. Periods have actually sometimes been shorter than they were on Nuvaring but I feel much, much sicker on my current periods -- which you'll see below are all over the place.

I will be honest, I am desperate for relief. I don't know if it is due to getting older, but I cannot handle this anymore. I am feeling sick all of the time. It hinders my social and romantic relationships. And I truly fear my fertility is beyond repair considering the lab tests attached above. I get debilitating migraines, I feel nauseous and vomit regularly, I'm so exhausted and get dizzy all the time, the cramping and constipation and breakouts... It's really, truly wearing on me. As a graduate student it regularly impacts my ability to complete work, and trying to get disability for "feminine issues" is a ******* joke. I should be graduating this spring and I want to live a normal life when I'm launched to my full career. It's miserable to be like this all the time. "What about stress?" I am not more stressed than I've ever been in my life.

I've had issues with doctors taking me seriously, or downplaying the severity of my symptoms. Hence, I am moving to a new OBGYN that I am excited to see mid-January. A lot of women rant and rave about finally having a voice or being genuinely listened to. That being said, I want to make the most of my appointment. I've found the most success in going into offices with an idea of what can be done, and I want to take an "aggressive" approach to treatment -- both traditional and experimental -- along with exploratory testing. The aforementioned helped me finally get treatment for my alopecia and forced doctors to survey why I was in such severe menstrual pain -- which revealed the teratoma. So, going in with a bit of a game plan has been helpful as well as approaching it as something i want investigated, not just “help me with x issue.”

For the past 9 months I have been tracking my period. Here are my cycles:

*February 17th-March 30th (this is two months post-Nuvaring)
-Bleeding: Feb 17th-March 4th

*March 31st-April 30th
-Bleeding: March 31st-April 6th (amazingly short!)

*May 1st-31st
-Bleeding May 1st-5th (another incredibly short cycle for me, I was hopeful I was becoming "regular!")

*June 1st-25th
-Bleeding: June 1st-6th (now things begin getting screwy again)

*June 26th-July 15th
-Bleeding: June 26th-July 5th

*July 16th-August 12th
-Bleeding: July 16th-August 9th (no spotting during the brief break before new cycle)

*August 13th-September 12th
-Bleeding: August 13th-August 23rd

*September 13th-20th
-Bleeding: September 13th-September 17th

*September 21st-October 20th
-Bleeding: September 21st-October 11th

*October 21st-November 13th
-Bleeding:October 21st-29th

*November 14th-December 2nd
-Bleeding: November 14th-23rd

*December 3rd-December 18th
-Bleeding: December 3rd-12th

*December 19th-now (ongoing)
-Bleeding: December 19th and still bright red moderate blood requiring 4-6 tampons a day on January 2nd.

No new meds introduced since I've gone off the Nuvaring, by the way.

Does anyone have any idea of what could be going on? What kind of tests or procedures that could be done to answer WHY and HOW this is happening? What is a comorbidity that could be at play and have a role in this? Medications that can give me some sense of normalcy for once? I'm beyond taking "some women have irregular periods!" Okay, but what is causing it? What can make them regular? What tests may point to underlying problems, no matter how unlikely or rare they may be? I sincerely cannot live like this for much longer. It is getting to the point that I would beg for a hysterectomy and HRT so I don't live in this hell, if it is what I am doomed to. Even if it means I could never carry my own children.

I genuinely fear my fertility is too far gone, as I am clearly not ovulating. Again, the dates provided do not include spotting, only full-blown period days. In the past, my OBGYN has seen the above panels and declared, "we will address that when you want to have children." I am getting towards the end of my childbearing years before I know it, and I want answers now -- to do anything to save what I might have. If doctor's would've done the same and listened earlier about my alopecia, I would've been able to have saved a lot of my hair, too. I have to live with those consequences and play reactive upkeep instead of proactive solutions. Fertility is even more consequential...

What are your opinions or suggestions? What do the blood panels paint as a story for you?
Signed -- desperate for help and wellness.
2 Responses
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973741 tn?1342342773
COMMUNITY LEADER
I agree with AnnieBrooke.  That may be an important piece to this.  I also am wondering your progesterone number.  This may be off base and irrelevant but my mother bled unless she took progesterone her entire adult life.  She'd have had a period every single day otherwise. There ARE aggressive things you can do but your fertility would be impacted and that's a consideration. Don't know where you are at with that. Ablation, hysterectomy. My friend has a fibroid that is inoperable for some reason and she bleeds heavily, cramps constantly and she is scheduled for her hysterectomy in February.  She's over it. Same reasons as you. However, she already had her two children and that is no longer a consideration for her.  I would HATE for any woman to have to make that choice.  When do you see the new ob/gyn?
Helpful - 1
2 Comments
I see her January 14th! I'm so excited haha.

Was your mom able to get pregnant successfully while on progesterone? Just curious. I know HRT can be very difficult and have negative side effects of their own even if the patient has low levels of a hormone and would benefit from that correction. Progesterone could be an issue, but I've been on progesterone-only BC and still -- bleeding all the time. I'm assuming there's probably less progesterone in BC than that which your mom was taking, though.

Yes, I really do not want to make that decision. I want at least 3 children and have 0. But if I already am suffering from ovarian failure, my hormones are too unstable, or my physical reproductive tract is damaged or substandard... I just want it out sooner rather than later. The nonstop bleeding and the terrible sickliness is getting out of control. I can't keep up with it much longer, it takes so much out of you. I'd rather try to salvage any eggs I may have (although I'm clearly not ovulating so I'm not hopeful about my egg reserve) and worry about surrogacy later on than waste away any eggs I have left in the hope one day I can get pregnant when many issues point to that being an unlikely possibility.
Oh gosh, that's all hard. My mom developed the issue after kids.  Remember, that through fertility, MOST women do get pregnant.  Not everyone but I believe the statistic is 95% have a child. I totally get saving eggs. I think that would give you piece of mind that one way or the other, you will have children. For the record, I had  my kids 'later' as others here have. I had two right before 40.  I had a lot of issues in my 20's and early 30's.  Very irregular and had a slow thyroid and too much estrogen.   When I married and we started trying to conceive, it was not happening.  I was scheduled to begin IVF when I found out I was pregnant (literally on the day I was supposed to start the process).  If you end up having a hyterectomy, save those eggs. We have another mom here who did so by surrogacy.  Let me know how the 14th goes!
134578 tn?1642048000
COMMUNITY LEADER
Has anyone suggested removing the teratoma? Anything irregular in the area could be playing games with your hormones by adding to the hormonal load.
Helpful - 1
2 Comments
The teratoma was removed in February 2017
My thought is that there could still be cells in the ovary from the teratoma, and that this is what continues to cause problems. I would suggest that since a hysterectomy is such a final solution in terms of your ability to have kids, if you are seriously considering one, talk to your doctor about just removing the ovary that had the teratoma, before going with the full hysterectomy.  If this turns out to have been problem, you would be feeling better with a minimal surgical intervention, and your ability to have kids would be preserved.
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