Endo success story (I hope!)


#1

Hi everyone,

I know when I read the endo forums, I tend to end up feeling depressed because I see so few people with success stories… so I thought maybe I should share mine.

My endo was diagnosed 6 years ago via lap due to a painful cyst on one of my ovaries. My obgyn did not remove the cyst, because it was so incorporated into the ovary she was afraid of damaging the ovary.

Last April, we started seeing an RE (I’m a lesbian, so we’re using DS - there were no at home tries). Our first try was August, negative - but not monitored or medicated. My September AF was realllly painful, and then the pain didn’t go away, particularly on my right side. Went to my OBGYN (because I thought that’s what I should do - now I know just tell my RE), and she had a tech do an ultrasound - the techs at her office aren’t allowed to say anything, so I had to wait for results. That was a Friday. Got a positive OPK that Sunday… called my RE’s office Monday morning in a panic because I still didn’t know the ultrasound results so didn’t know if I should do an IUI or not. Got them faxed over - 4 endometriomas, two on each ovary. Cancelled the cycle, schedule surgery for October.

She removed the four endometriomas in October, but was pretty sure she didn’t get all of one of them on my right side (probably that original one), and diagnosed me with stage IV endo.

Then, theoretically, two cycles off to heal. The first was long (34 days), and ended in an AF that was light but didn’t stop. Then, two weeks later (after bleeding for two weeks), I had REALLY HEAVY bleeding, which a blood test confirmed was another visit from AF (a two week cycle?). I was put on BCP to stop the bleeding, so that cycle’s length was determined by those…

Then, theoretically starting to try again in January. Had a 15 day cycle, no positive OPK when I was testing. Added clomid, got a 19 day cycle with no positive OPK. So my RE did a diagnostic cycle - and on day 4 I had a 14mm follicle, high E2, low FSH… triggered on day 7, IUI on day 9, AF started on day 17 (for a 7 day luteal phase…).

My doc said she thought my ovaries were in decline due to trauma from the endo. She believed IVF would be my only chance, and encouraged me to consider partner assisted reproduction (use my wife’s eggs). But I need 6 IUIs before my insurance will pay for IVF, so we moved on to #3.

And suddenly my cycles were normal again. That cycle was not medicated (until trigger and LP). I had my IUI on CD 16. I had pain all cycle from my right ovary, though - like that I had had before the surgery. And it was negative. But I was hopeful, as was my doc - maybe my ovaries needed a little more time to heal.

So try #4 was this past cycle. We added clomid (need 3 medicated cycles before IVF). I joined a clinical trial trying to delay the LH surge. I had three mature follicles on trigger day (and one at 14mm), and the remains of the endometrioma on the right side were nearly back to pre-surgery size. I had right ovary pain until the day after the trigger… and then it went away.

I had a .45 dip in my BBT at 12dpiui, followed by a .38 rise the next day, and a .36 rise the day after that. And I had a negative HPT on the evening of 13dpiui… and a positive blood test the next day (lowish: 25). No spotting, I have mild nausea, mild headaches, bb tenderness and tingling… and my HPTs are getting darker. Went in this morning for a second beta, and I expect it’ll be higher. I think it was low because I think I implanted 12dpiui.

My biggest fear before this cycle was that my egg quality is horrible. This cycle proves that sperm - frozen donor sperm - can meet egg, fertilize, and implant.

In case it helps anyone, here’s what I changed after the scary cycles:

  1. my diet - I cut back on grains/carbs in general, and reallllly focused on getting fruits and vegetables. Veggies made up over half my diet, and between them and fruit I was probably between 2/3 and 3/4 fruits and veggies.
  2. Supplements: I added L-arginine, B-complex, calcium/magnesium/zinc, royal jelly with bee propolis, bee pollen, korean and siberian ginseng, in raw honey.
  3. Walking - lots more walking.
  4. Acupuncture - on CD 6, before and after IUI on the day of, and 7dpiui.
  5. Meditation, to try to reduce my anxiety over all this.

Regardless, I have an endometrioma on my right ovary. I have stage IV endo. I have a doctor who was really worried about my egg quality. And I conceived on my 4th try. As I was pointing out to my wife last night, while it was my 4th try, the pre-surgery try was probably a bust due to 4 endometriomas, and the short cycle one was clearly also a bust since everything was so off. So really, this was my second serious try.

So, for all those out there struggling… it CAN work. It CAN work with stage IV endo. It CAN work with an endometrioma (my largest follicle was on that side, too). It CAN work with donor sperm (and the total motile was only 9million post wash). It CAN work with a negative HPT 13days post ovulation. I can’t point at one thing and say “that’s what did it” but I can say I put a ton of effort into improving egg quality, overall health, and stress levels.

I wish all of you the best of luck!


#2

Just updating those of you who want to keep hearing.

Still seem to be going strong! I get occasional twinges, sometimes a little more than twinges, on the side with the endometrioma, and a few twinges on the other side sometimes too (I wonder why - those endometriomas were entirely removed… I wonder if my ovary has healed to the side wall and as things develop, it gets pushed around and hurts… we’ll see.)

Anyway, I’m 9 weeks tomorrow and looking good!