11 Years of Horrendous Bleeding! - Mothering Forums

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#1 of 7 Old 05-25-2013, 07:35 AM - Thread Starter
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Hi ladies,
I'm here in desperation, hence the title! Not necessarily looking for concrete answers or any diagnosis of course but more hunting for women who have been through what I've got going on with my body, or know someone who has this, etc. I just feel very alone in it all. I'm going to be very graphic and TMI in an effort to get as much out here as I can. I appreciate anyone willing to take the time to read this. My husband and I are really wanting to have another baby and I'm deeply depressed that nothing is ever going to be right with me.
For 11 years I've had major menstrual cycle woes. It started with the first real period I had after the birth of my second child in 2002, when she was 12 weeks old, the period lasted 8 weeks. I had a perfect 28 day cycle before this so I was very taken aback, went to my Dr. who checked me over and found nothing amiss. Wanted to try me on Birth Control but I've never been a fan. To put age into perspective here, in 2002 when this all started I was only 17 years old. Yes, I was very young- that's a story for another day but ultimately I've been happily with my husband for 13 years ;-)
I decided to hold off on BC, and see what happened. Well what happened was a couple months of no period at all and then it was like someone opened flood gates. This went on and off for 6 weeks this time and by on and off I literally mean day one I may bleed like crazy, day two there is not ANYTHING, day three on again, and so on. I ended up at the ER cause I was literally soaking two huge cloth pads an hour and I was scared to death that I was going to like bleed to death. I'll never forget that, the ER Dr. literally told me "No one's ever bled to death from a heavy period." This same Dr. is the one who blessed me by being the first Dr. to ever utter the words "Dysfunctional Uterine Bleeding" to me. I hate, hate, hate that term. It feels like a great big "I don't know!".
Anyway, after this point I caved to the BC idea and my OB/GYN talked me into using the ortho patch since it was easy. I used the patch for 2 years and it did work to regulate me beautifully. I came off of it experimentally to see how my body would react after 2 years and things seemed fine but I got pregnant right off the bat. I remember knowing something wasn't right with the baby from the moment I saw the positive pregnancy test. I put my head down on my dining room table and sobbed, not because I didn't want to be pregnant, but because I knew deep down that something was very wrong. The pregnancy progressed and I was very diligent in telling my Dr. that I felt like something was amiss. She assured me time and time again that everything with the baby was on track. Ultimately, when I was 22 weeks pregnant, the baby passed away from an umbilical cord defect in which the cord actually tapered and was much too narrow close to his tummy, allowing it to get pinched/twisted very, very easily. That was the worst experience of my life. I had to be induced and the whole nine yards. This was in December of 2004.
Physically I healed and I had a normal cycle and period. By February of 2005, I was pregnant with baby 4. Everything went fine, she was born in November of 2005. I exclusively breastfed her for 6 months and I did not have a period in that time. When it did come back, it was terrible right away. 7-8 weeks long, not always heavy, but non stop. Back to the Dr. her advice was for me to try taking Depo shots. I did two. I felt terrible. When I stopped taking them the flow came back with a vengeance. Since that point it has been a constant horrendous battle with my body. I do not believe I am ovulating anymore. It's been 7 years of unprotected sex and not a single even pregnancy scare, nothing.
I do battle with anemia on and off, I have to watch myself. But I just want to bash my head against a wall.
No one has answers. My current Dr.s only response, repeatedly is "Lets try you on some BC". I don't want to go on any BC, it's kinda counter productive to my current goal of actually getting pregnant!
All of my pap smears come back normal. All of my blood work comes back normal. I've had an ultrasound done (ages ago) but it too was normal. The only thing I hear is "Dysfunctional Uterine Bleeding" and "It might be PCOS" but never anything about taking steps to figure out if it is or not.
I am significantly overweight. I always have been but it has gone up over the years. Other than the loss of our son in 2004, our other pregnancies have been perfect and births have all been natural.
As of right now, I have had less than a month of non bleeding days, since NOVEMBER. I'm tired, I'm desperate, and very, very concerned.
Here is an example of what is normal for me:
Lets say I start on a non bleeding day, nothing going on whatsoever. This is day one.
Day two, out of the blue with no rhyme or reason, I will start to cramp and the cramps will get progressively heavy and painful until I am suddenly passing what are, at times, large clots. After I pass these clots, the flow will stop and by the next morning...
Day three, no bleeding all damn day.
Repeat. I mean there are variations and I'm NOT always clotting like that but the theme is the same as far as- nothing, then cramps, then clots, then nothing. I do have times, days where I am just passing liquid flow in varying amounts with no clots. I seem to run the full spectrum. It wasn't always like this, for years I would just be passing large amounts of liquid flow.
Once I'm actually in the middle of a particularly bad "attack" the only thing that can stave it off and even stop it is large regular doses of Ibuprofen, which I do not use often at all. But exercise doesn't help, resting doesn't help, hot baths don't help, etc.
Something possibly controversial that I've been experimenting with lately is nipple stimulation because I had this thought that if I were to re lactate I might be able to get this under control from a stopping the periods standpoint. It does actually work. If I pump every four hours for 2 days straight, it will totally stop and I've gotten over a week "off time" out of that. My problem with doing this constantly is that it will further inhibit ovulation.
I may add more to this, but for now this is a start. I'm hoping someone has some experience with this kind of problem, even if it's just a story "Hey, my friend of a friend of a friend had this!" I just feel very alone and depressed and like we will never have another baby. I'm desperately looking at all these different ideas like herbs and acupuncture, and anything I can get my hands on.
I appreciate you all taking the time to read this. ((hugs))
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#2 of 7 Old 05-25-2013, 07:40 AM - Thread Starter
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I forgot to mention that there are times that when I'm not bleeding, sex or an orgasm will bring it on within moments but that there are also times where if I am bleeding, sex or an orgasm will stop it, for days sometimes.

 Totally NO rhyme or reason to any of it. It's insanity!!

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#3 of 7 Old 05-25-2013, 09:43 AM
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hug2.gifIt sounds like you have been through a lot! It's annoying that the docs have been no help. Have you tried seeing a reproductive specialist? I really don't have any advice to offer other than regular obgyns often aren't as familiar with issues as a specialist.

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#4 of 7 Old 05-25-2013, 03:54 PM - Thread Starter
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Hi there, thanks for the reply!

 No, I have not a specialist, insurance and money have been an issue but it's something I'm open minded to. Maybe I need to pursue that more seriously. My current Dr. made a comment a couple months ago that fat stores estrogen and that my weight may very well be causing my hormones to be out of whack. Does anyone have experience with this statement? Is it true?

 I've also lately considered trying some kind of Birth Control short term to see if it *might* regulate me just enough for me to come off and get pregnant. Has anyone had something like that work?

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#5 of 7 Old 05-28-2013, 09:04 AM
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So sorry you are going through this and without a doctor who is willing to look harder. Is there any chance you can see a new doctor?


I have had heavy periods since starting my period, however after my children they became horrendous! Clots, feeling weak and soaking through pads and tampons like crazy. My doctors have never been too concerned but mine have only really lasted for 4-5 days. And really only two really heavy days.

I too am overweight and my first birth triggered a lot of health issues and the second only made them worse. I was also diagnosed with Celiac disease and finally (although nothing to do with the births) Fibromyalgia. I'm finally feeling great now that we are able to be proactive on both of these and my husband and I are in the position to think about TTC again. 

So my current doctor (new to me as we just moved) has put me on small dose progesterone as my period the last year have been a little wonky and I haven't gotten them a couple times. She also put me on Metformin to help me lose a bit of weight and because it can help one get pregnant. I haven't noticed a big difference with the Metformin, but I am raving about the progesterone. It has slowed my periods considerably. The first month I was on it I didn't even need a pad! They've regulated  bit more and are lasting a full 5 days instead of my usual 4 but they are much lighter in general and no clots. Of course it's made my usually regular cycle a bit wonky but for the reduced bleeding I'm enjoying it!

Of course progesterone is usually used to bring on bleeding but when I talked to my best friend who's also a pharmacist, she said that it can also slow bleeding as well and it's safe to take while trying to get pregnant and once pregnant to try and help continue the pregnancy (which I've lost a couple since my second born). 

I simply wanted to share my story as I've been in a similar boat. Sometimes I think it takes a new doctor looking at your history with a fresh look. So I'd either be looking for a second opinion or a referral to a specialist :) Hopefully things work out for you soon!

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#6 of 7 Old 06-09-2013, 12:40 PM
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Several years ago I started having crazy periods every two weeks. I went to so many docs. No one could find everything and said I was "normal". I had a hunch there was something wrong with my thyroid but no one would believe me. I was also have horrible back pain and an unexplained rash on my face. I put on a lot of weight.

Finally, I saw a naturopath who put me on thyroid meds right away. A couple of years later I was diagnosed with Hashimotos Thyroiditis and got on some additional meds. I got pregnant immediately after!

If I were you, I would consider finding a naturopath. I know it's expensive but can be so worth it. Alternatively, you could see an endocrinologist but just make sure they are more modern in their thinking.

I'm sorry you're going through this. Good luck on your healing journey. <3

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#7 of 7 Old 06-19-2013, 11:32 AM
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I completely second seeing a naturopath if you can.  Some insurances cover it just like any other doctor.  I've had crazy cycles since the start, some months bleeding for 3 weeks straight - or even all the way through for 2 months or more at a time (not always heavy, sometimes very light but still there). I started seeing a naturopath, and on my first visit she started treating me for PCOS & thyroid issues.  A few months in to seeing her, I started seeing an acupuncturist also (something else I highly recommend).  My cycles are now the most normal they've ever been, I can tell when I ovulate, and I'm feeling better than I have in years.


I hope you can find the answers you need too - good luck!

Married my best friend & love of my life 11/12 , proud bonus momma to dss (13). TTC our first together. We like and plan to
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