TTC and endometriosis :(

[Coolstar]

Hi ladies , this is the first time I am posting in LTTC. Today I am so depressed and sad as if I have lost all hope I don't know how much more can I take. We have been ttc from Jan 2012 although from Jan'13 to June'13 I took a break. Never thought it would be so tough. I have already done 3 rounds of clomid and I think the med did not suit me and it did more harm then any good. My progesterone level is also low so I decided to do some test and found out that I have endometriosis . Also did lap and dye and luckily my tubes were ok , but my estrogen level was very high. My doc told me to ttc till Aug before going for a lap. But I am just losing all hope, we have ttc this cycle after a long break but now I have slowly excepted the fact that I may never be able to conceive. My DH sperm test result was good, I feel very sad from him that because of me he has to go through all this. He is very supportive and never said a word about it but I cant stop blaming myself. Last 1.5yrs have been the longest yrs of my life

 

[Mrs B.]

 

[pbl_ge]

Cool, so sorry you're in this position. You've come to the right place, though.

So how did they determine you have endometriosis without the lap? I thought that was the only way. They just found endo in my lap last month. It isn't necessarily a terrible diagnosis, as lots of women have it but still get pregnant. For some women (although the # isn't clear), the lap can really help.

You and your OH may want to discuss what you'd be willing to do in terms of assisted conception. You also might want to ask your doc about progesterone supplementation during your luteal phase. Just remember that you still have options, so you don't have to give up hope of getting your bfp.

And, hi MrsB! I remember you.

 

[Goldfish]

Don't lose hope! I know how you feel though - I have endo too, but only found out 2 years ago when I had a lot of pain. Although I haven't had a BFP (but my endo is pretty severe and I also have low AMH), I know of other women in real life and on BnB who have managed to conceive naturally with endo. I'm a bit confused though - you said your doc told you to TTC till August before going for a lap, but did you have a lap to check your tubes recently too?? Or do you mean you had another procedure to check your tubes (not a lap)?

Also, hi pbl_ge - I remember you from an old thread we were on together!

 

[Mrs B.]

Cool, so sorry you're in this position. You've come to the right place, though.

So how did they determine you have endometriosis without the lap? I thought that was the only way. They just found endo in my lap last month. It isn't necessarily a terrible diagnosis, as lots of women have it but still get pregnant. For some women (although the # isn't clear), the lap can really help.

You and your OH may want to discuss what you'd be willing to do in terms of assisted conception. You also might want to ask your doc about progesterone supplementation during your luteal phase. Just remember that you still have options, so you don't have to give up hope of getting your bfp.

And, hi MrsB! I remember you.

Hi pbl_ge! I remember you too

P.S - I'd also like to know how they found endo without the lap? I suspect I have it, but doc agreed that having a lap wasn't worth it in my situation (no symptoms other than painful periods). And Cool - a lot of people who have endo do manage to get pregnant, some naturally, some with a bit of help. Please don't think it's the end of your journey because it's not.

 

[MissGossip]

Hi ladies,

I'm currently n my period and am convinced I have endo, I have always had bad period pains but not excrutiating, the past couple of months I have had the WORST pain during bowel movement during my period, to the point where I can't go and make myself constipated for days it hurts that bad! I am SO scared to find out I have endo but have a docs appointment on Tues really been emotional today as I feel like maybe I'm just not meant to have children xxx

 

[Mrs B.]

Miss Gossip - Good luck at the docs, but remember that even if you do have endo it does not mean you won't have kids. Lots of people with endo (mild, moderate and severe) have children.

 

[Coolstar]

Sorry Ladies I could not reply soon coz every time I used to log in Bnb my laptop used to freeze. They told me I have endo with ultrasound (They did an internal ultrasound ). But did told me the extend of endo can only be diagnosed after lap. About the tubes they did HSG where they insert dye and then takes X ray.
I have no period pain. Before clomid at least my cycles were regular but for the the last 6 months after clomid everything as became haywire. Some cycle 16 days while next cycle 60 days . I am scheduled to a diff RE on Monday. Lets see what she has to say. I am so happy that I found support in LTTC.

 

[Coolstar]

Hi ladies,

I'm currently n my period and am convinced I have endo, I have always had bad period pains but not excrutiating, the past couple of months I have had the WORST pain during bowel movement during my period, to the point where I can't go and make myself constipated for days it hurts that bad! I am SO scared to find out I have endo but have a docs appointment on Tues really been emotional today as I feel like maybe I'm just not meant to have children xxx

Wish u all the best. I know how you feel, we are all with you

 

[Goldfish]

Coolstar - thanks for explaining, I get it now. I was told I probably had endo via a scan as well (they saw 2 big endometriomas on my ovaries) and the I had it formally diagnosed at the laparoscopy.

missgossip - good to hear that you have a dr appt soon. I know it's scary, but it really is better to know if you have any problems so they can help you, though I hope you don't have endo!

 

[Coolstar]

Goldfish : So you are free from endo after the lap right ? I have read many cases that endo returns soon after lap and 2nd time it is more fierce

 

[pbl_ge]

Oooh, is this a new endo group starting up in LTTTC? I love it!

Cool, thanks for explaining. Did they tell you what evidence they saw of the endo in your scan? The doc told me they usually can't see it. I'm sorry your cycles have gotten wacky. Hopefully the new RE will help.

Goldfish, I remember you too. It looks like you had a bust of an IVF cycle--I'm so sorry, that must have been heartbreaking. Are you planning on trying again with a different protocol?

MissGossip, FX you don't have endo, but as MrsB points out, it's not the worst diagnosis to have. It's just a weird one that I don't think they understand very well yet. Hope you get good news.

MrsB, I definitely agree that lots of ladies with endo get sticky bfps!

Can we share our understanding of endo and how it affects fertility? I'm really confused about some things, and I think that confusion reflects the current science, but I'm not 100%. It seems like they don't really know why endo can affect fertility for those women who have not had structural damage. My doctor said it's believed to be due to inflammation processes. Is that what others have heard, too? He also said that only about 1/12 women with endo benefit from the lap, meaning that only an additional ~8.3% will get pregnant after a lap compared with endo women who didn't have the lap. I don't remember if that's in 6 or 12 months.

Does this sound like what you were told, too? If so, is anyone doing anything to reduce inflammation in the body? Like the endo diet?
https://www.endo-resolved.com/diet.html

I'm unconvinced about how beneficial it would be, but I'd be willing to try if I thought there was a good chance it would help.

Has anyone else heard anything that would be helpful?

 

[Coolstar]

Wow so nice to connect with you Ladies !! I mean Endo is such a heart breaking thing to have, more then the pain it is the infertility .
I totally agree with pbl_ge . I think no one understands Endo properly.... like why it happens, why some get PG even with endo while others cant and most importantly how helpful is lap.
I am going to RE on Mon so if you Ladies have any question you can post and I can ask her and let you know.
Ya even I have heard about the endo diet but not sure how much it will help. I had read that if you have endo you should remain away from Milk products, soy, wheat and try to stick to more organic products.
Personally this cycle after ov I have started using progesterone cream. I don't know how much it will help but I think I have estrogen dominance too.

 

[Goldfish]

Coolstar - unfortunately once you have endo you'll never really be free from it... I had lots of adhesions and the dr only managed to remove 1 endometrioma (he just drained the other one). after having a course of zoladex my AF returned and my endometrioma grew back pretty quickly so I'm a bit scared. Luckily I haven't had pain though apart from some strange twinges once in a while.

Pbl - yes, we are hoping to do IVF again soon with a slightly different protocol (still the long protocol, but doing a short course of BCPs before that to try and calm the endo down a bit, plus I'll be on a higher dose of stimulation drugs due to my low AMH).

I've also read about the link to inflammation. Apparently the endo causes our bodies to release inflammatory things that can impede implantation. Ive read about that endo diet but I can't afford to cut out food groups because I'm a bit underweight as it is and have trouble putting on weight! also I love my pasta and dairy too much!

on a positive note my friend had a lap for her endo when she was younger and she's managed to have 3 kids naturally!

 

[Coolstar]

Ooohhh what a stupid, frustrating and sad situation we are in I mean what's the use of doing lap if it returns I just feel like banging my head somewhere.
Gold : I am sure next time your IVF will be a success.

 

[Goldfish]

Coolstar - yes, it is very frustrating when our bodies don't behave, but at least the lap did reduce my pain. Although since finding out that I have very low AMH just before doing my first IVF, I do often wonder if it was the lap that contributed to this. But we're strong women and I still have hope that we will all be mums one day! It's nice to have other women in similar situations to talk to because I don't really have anyone in real life who understands what I've been through...

 

[Coolstar]

Does lap contribute to low AMH ,I did not know about it
Even for me its the same situation. Except my DH I have no one in real life to talk about my problems It's nice to connect with you all.

 

[pbl_ge]

Coolstar, I would love to hear what your RE says about how endo can affect fertility, and if s/he thinks that reducing inflammation is a good idea. Maybe even ask specifically about the endo diet? I've also heard that estrogen can increase endo problems (?? ), and that there's a link with estrogen dominance and endo. But that may be BnB chatter that's not necessarily fact based.

Goldfish, hope the next IVF works out!

I think the low AMH following a lap may be due to damage to the ovaries. Is that right?

Took my last BCP today, so now I'm waiting for AF to begin so I can start with the needles!

 

[Coolstar]

pbl : I did not understand what you mean by reducing inflammation ??? Do you mean taking BCP ?

 

[pbl_ge]

No, sorry, I meant by following the health and diet plans that reduce overall inflammation in the body.

Random links:
https://www.eatingwell.com/nutritio...ws_information/10_ways_to_reduce_inflammation
https://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

Did you already have you dr's visit? How did it go?