Newbie TTC w/ endo -- any advice?

[BuffaloGal]

Hi everyone!

I'm new here and am hoping the wisdom in this group can help me out. I'm 35 and have been ttc for 5 cycles. I've been temping, and my charts look good, but nothing yet!

Now, the thing is that about 3 years ago I was diagnosed with endo on my utero-sacral ligament. (Not really sure exactly where down there that is...) I asked about treatment, and my gyn said she'd do surgery if "the pain got too bad". I guess I have a high pain tolerance? I also moved away, got a new job, got married, so my life was distracted enough and I didn't get to scheduling a surgery. (Also I'm a little nervous about surgery in general....)

Anyhow, about a year and a half ago I unexpectedly got pregnant the day we we were NTNP, but had a MC after 7 weeks. We have just emotionally worked back into TTC on Jan 1 of this year.

When we "officially" started TTC I went to a midwife for a pap and check in, and she said everything looked good, but didn't do any specific tests. (I don't even know how they can test for endo -- my former gyn told me they diagnose when they are doing the surgery to remove it. How does that work?!!?)

So after that long intro, my question for you ladies is -- does anyone else have experience with endo that's bad enough to give you painful periods, but not bad enough to send you running for surgery? When do you decide its time to go in? Have I made my attempts at baby making more difficult?

I've read all I can about endo and ttc but I am hoping to hear your experiences. Thanks for your stories!

 

[Elski]

How did they officially diagnose your endo, through lap?

I have chronic pain with my endo - basically like period pain but all the time - and I've got my fourth lap and excision in July. Endo on your utero-sacral ligament is unlikely to interfere too much with TTC but the thing with endo is, it's an inflammatory condition which can make it hard for an embryo to implant and stay implanted. You could start taking some Bee Propolis daily (from health store/drug store) as it's an excellent anti-inflammatory.

Good luck!

 

[alison29]

I agree the problem with endo and fertility is that it causes an inflammation response (the lesions) in your body and your bodies immune cells go into over drive and can eliminate potential attaching embryos. I read bee propolis works good too and fish oil.

 

[babydreams99]

Hi - sorry to hear you have endo too. I would recommend actually having the surgery. I've had laps many times, and it's a really good way of them having a look around to make sure you don't have any blockages in your tubes (sperm won't even reach the egg) or adhesions joining your tubes to your bowels etc (I had this and had it lasered to separate it). They also do any treatment you need on the spot if they can. I know several people who had endo and got pregnant the first cycle after having the operation.
Also, endo is an immune disorder, so if you have it badly the environment will be too hostile to "house" the growing bub.
Also, I've heard of someone through another forum that had her uterus joined to bowel, and if she had conceived could have died as the baby grew.
Also, if you are suffering pain constantly your body will be releasing all kinds of stress chemicals which could affect your ability to conceive.

So in a nutshell, I believe you should have the laporoscopy, or request this alternative, which I am hopefully having next week (you need to be day 5-11 of your cycle and mine is a bit late):

HCG - Hysterosalpingogram. Google the details, but it's like having a pap smear and they insert die into your uterus. The sensitive ultrasound then detects if the dye is able to move through the tubes ok, and if you have any blockages. You don't even need a local anaesthetic for it.

The danger of charting is that it shows the body's capacity to ovulate every month, but doesn't actually indicate if the egg is actually released, or if there are blockages stopping it's journey towards waiting spermies.

Hope that helps a bit. Sorry for long reply.

Diet wise - cut down on sugar and alcohol (sugar is worst thing in the world for endo - it festers in it), eat more leafy greens, take strong supplements of Flaxseed oil or fish oil (google required quantities, as drugstore ones sometimes not strong enough concentrations - go to health food store) and do exercise to stimulate blood flow and get rid of the sluggish endo cells that sit there and can develop into adhesions.

Chinese medicine has also worked nicely for me in alleviating pain and lightening the blood flow - I'm taking a blood tonic concoction.

Keep me posted how you're doing.
xxx

 

[babydreams99]

P.S - where are you based? When I lived in the UK my specialist (who was considered one of the best in the UK) said I had bad lesions (one ovary stuck to bowel, the other tied down to uterus) that she would laser when it was "time to conceive". I moved to Australia and saw the specialist here after a couple of years as was in a lot of pain and she was flabbergasted - said why go through life in pain - and she did the op anyway. I've been really good for the past 7 years and now only having the HSG test to see if my endo is back and that is why not conceiving.

 

[BuffaloGal]

I was quasi-diagnosed at my annual exam -- I told my gyn about the pain I was having, and the INTENSE periods (passed out one time-- yikes!) and she asked me a few questions. Then she, on a hunch, poked on my ligament during the exam, and I nearly screamed from the pain. She said she was sure that I had endo, but that the official diagnosis is actually made during the surgery. Then not having the surgery, I guess I was never technically diagnosed...

Thank you Elski and Alison29 for the bee propolis idea. Of course I misread, and went out and got a bottle of bee pollen! Bah! It's supposed to be good for the immune system, so why not.... But I will try to find some propolis next go round at the health food store.

Babydreams99 -- I'm based in Buffalo, NY, and I haven't seen a specialist about this before. I did just have my first appointment with an RE, and he didn't seem phased by the endo just yet -- I'm going to try a few cycles of clomid, and if still no BFP, he suggested the HCG.

You are SO right about avoiding alcohol -- if I have even a wee drink the night before my AF I will be so cramped and nauseous for 2 days. I didn't know sugar was a bad one too, so out it goes!

Thanks for all the good advice and sorry for the long reply!

 

[cherrycherry]

hey guys,

Just wanted to say I aslo am TTC number 1 with endo and after having had 2 Excision surgery's still hasnt worked. I as of last week started taking bee propolis too as well as a good fish oil vitamin and baby aspirin in hopes it will treat my inflammation. here's hoping aih!!...... can only just keep trying different things until something works! I have heard lots of good things about Bee Propolis and Royal Jelly too. Some people tried for years then started taking these and Bam! preggo.. good luck xx

 

[Gingersnaps]

Hi guys,
I was diagnosed through surgery, as having endo about a year and a half ago. Mine is pretty extensive - one tube is attached to my stomach, lots of adhesions on my uterus, my bowels are apparently misplaced...and so on.... I had half of one ovary removed during surgery but most of the adhesions were too dangerous to remove ie they could puncture my bowel accidentally or my stomach.
I have also recently before the surgery considered I might have celiac disease and that was confirmed during my op. What I have learned is for many of us with endo, gluten is inflammatory and the endo results from the inflammation. Try going gluten free but you must be 100 percent gluten free as even a minuscule amount can lead to a inflammatory reaction.
I have seen improvements in my periods with eliminating gluten, taking baby aspirin and RRL tea up until O.
Like you I had minimal pain but my periods were heavy and clotty.