Endo mamas, are you out there?

[aphel]

So, I lurk around here from time to time, but haven't seen many posts on the topic. I'm wondering if any of you are out there and what your stories are? It would be great to find some MDC moms who have endometriosis, how it's affected your fertility/life in general and what you have done for treatment, both from a natural standpoint and a medical . . . .

I'm L, the (very) short version of my story is this:  Diagnosed with stage II endometriosis at 22 via lap, told we should TTC soon, but that IVF was a definite possibility. After one blighted ovum (or pg failed because of low progesterone, we'll never know) we conceived DD via a triggered cycle of IUI (no stim drugs though), with progesterone support. We were lucky, but we gave up a lot to have her this young.

DD is five months, and I'm thankfully having no symptoms. We have been told we should wait no more than two years to TTC the next. I am not a candidate for a future lap, due to excessive scar tissue and the way that I heal, and I would like to avoid IVF if we can. We are trying to find a way to make this doable financially, emotionally, and academically, as I'm preparing to enter into a 2-year nursing program which I will not be able to take a leave of absence from. 

So that is me. I would love to hear from other moms who have BTDT or are there now!

[wallabi]

Hi L,

Congrats on your little girl, and yay that your symptoms haven`t come back!!

I have endo too, stage 4, pain started very suddenly when I was 20 and I got a tentative dx from a fabulous nurse practitioner I used to see as a GP, but then went through 3 gyns and an RE, being told repeatedly that it wasn`t endo, I was too young, etc.  until at 24, after 2 years ttc, I had surgery to remove an ovarian cyst ("it`s probably not cancer, but we need to operate to be sure" - where is the eye rolling smiley? what, me, bitter?) that turned out to be a chocolate cyst. Dh and I have tried on and off for over 8 years now, though never going beyond clomid and recently, progesterone, because the RE didn`t think IUI would do  much for us (though he was quite willing to try, but without any confidence in it, we so far haven`t been willing to go through it).

A few months after getting the endo dx, and after several unsuccessful rounds of clomid, we decided to move on to adoption, and before doing that, to make a permanant (-ish, one never knows) move to Japan, which is my DHs home. We adopted our 4 year old dd 2 years ago, and are keeping our foster-adopt license open, but as relatively few children are placed in our city, we are also back to TTC. We would love for dd to have siblings, either through adoption or through me, so hopefully ....

Sorry, "short and concise" is obviously not my specialty!!

As to living with the endo - my symptoms come and go - for months on end I will have some kind of pain almost every day, and have to spend the first few days of my cycles either in bed or on prescription painkillers, and then for months, practically nothing. I got a lot of help from a traditional Chinese medicine pharmacist guy a few years ago (sorry, I forget the proper word for that in English - I saw him in Japan).

The thing that has made the biggest difference for me has been going gluten free. This is a tricky one to unravel - I think I probably have celiac disease, as opposed to a gluten intolerance (my reasoning - strong family history of gluten problems and personal and family history of autoimmune diseases), and my nearest guess is that when I was eating the gluten my overall health was disintegrating, and this in turn allowed the endo to flourish. Now that I have been mostly GF for just over a year now, the effect of eating gluten is very pronounced - immediately on my general health and digestion, and over the course of months as it seems to wake up the endo. I accidentally had gluten at my IL`s last August and the following 4 periods were aweful - in fact, it was this last bout that sent me to the dr for prescription painkillers. Thankfully, this phase seems to have passed, but I am stuck in some other part of unwellness, and I think the gluten may also be triggering thyroid problems. Still puzzling it out, though.

Since you are heading into nursing, have you been doing research on endo at all? I read studies in the online medical journals about endo and autoimmune diseases - from an intellectual standpoint it is a fascinating field, as there is so much not yet known, but from a person-who-is-unwell point of view, I find it a tad frustrating, as there is so much not yet known.

Anyway, you now have one reply, and what I lack in strength of numbers, being but a single person, I make up for in verbosity!! Other endo mamas, join up!

[aphel]

Wallabi, thanks for responding, I'm so glad we've found each other!

Our stories have some striking similarities. I too was told that I was "too young" to have endo by both my GP and two GYNs. The first GYN ignored many of my symptoms, including bleeding after sex. The next was no better. In fact, when I questioned him as to whether or not I should try to TTC, his exact words were "As a father of daughters, I feel that you're just too young to be thinking about this." He went on to say that "Endo only affects older women.", and that "Even if you do have endo, you can always do IVF later on, when you're older."

After a CT scan, a colonoscopy, and endoscopy, multiple ultrasounds, several trips to the ER, and x-rays of both hips failed to reveal the cause of my pain, I essentially diagnosed myself (see, google isn't always evil!), found the best surgeon I could find in the area, was in his office by the end of the month, and scheduled for surgery the tuesday after I met him. I too had a cyst that appeared to have a solid component, hence the hurry for the lap. It turned out that it was actually a simple cyst, thankfully, and not an endometrioma. But there were implants on both ovaries, the back of my uterus, my bladder, and one tube, as well as multiple adhesions (including one that essentially glued my left ovary to my abdominal wall). We were told to "get everything in line" and come back in the summer to start our journey to TTC (this was in Feb. '09).

I'm glad you've found some relief by going gluten free. I actually had a esophageal biopsy during my endoscopy, and I am not celiac. Despite this, eliminating gluten has been something on my mind, but I'm finding it difficult to make the sacrifice, I feel like this condition has already governed so much in my life (family planning, school, finances), does that make sense? However, that's easy for me to say, seeing as I'm pretty asymptomatic at the moment. I may well be singing a different tune soon enough . . . .

I hope that your plans to conceive are more fruitful in this new round of treatments, and that a new sibling for your daughter finds their way into your family, whether it be through conception or adoption. My Mr. and I have always discussed adoption, since long before the endo dx, and since we want a large family eventually, we plan that it will most likely be in our future as well. Although I do very much hope for you that you are able to conceive/carry one of your children, because clearly it is something you want. Is this your first attempt to TTC gluten free? I'm wondering if the lessened inflammation will/has impacted your fertility in any way?

As far as research, I admit I'm a bit burned out. I'm still pretty angry that I had to diagnose myself. The last thing I did find was some interesting research from Dr. Nulun at Northwestern Hospital, regarding (I think, it's been a while) enzymatic function in the peritoneum of endometriotic women. I don't have the link, but it's worth checking out.

So clearly this just isn't a topic one can be very concise about! I appear to have written a short novel as well. . . . Looking forward to hearing back from you, and from anyone else who has yet to find us.