Endometriosis

Drove2u · July 2015

i have a question for you all who have endometriosis. Is this something that you knew you had before starting fertility treatments or is this something the doctors have discovered in the middle of your treatment?

betwise · July 2015

@Drove2u I knew I had it before. I was having major pain in my right ovary area and in my uterus. My periods were not that terrible at the time (they have since become terrible) but I had painful sex and was in constant pain. They suspected I had endo but weren't positive bc you can't know for sure without a lap surgery. They did the surgery and discovered I had it. I have since had 3 surgeries to get "cleaned out".

Drove2u · July 2015

Oh wow. So most people know that they have it then right?

MKLEWIS2010 · July 2015

I was having a lot of painful periods after I came off my pills and started trying. 3 years later after my OB didn't take my concerns seriously I changed doctors and she thought that was what I had she referred me to an RE who diagnosed me with it and I had laparoscopy in jan to have it removed.

KidShrink · July 2015

I had suspicions, but none of the doctors I saw initially believed it was endo. *Warning, might get TMI*- I started having mild pain when peeing while I was having my period the last 2-3 months I was on BCP. We then decided to TTC, so off the BCP I went. Every month the pain got worse, but was gone as soon as AF was gone. I eventually saw a pelvic health osteo who managed to make the pain go away. I also had pain/tightness on my right side around the waist (almost like a belt that's too tight)- no matter how much stretching or exercise, wouldn't go away and came back every period. Then I started having awful diarrhea, only when having my period. I was eventually diagnosed with fatty liver disease, which was a bit of a mystery considering I don't really drink and I'n not overweight. Got that under control, and they discovered polyps in my gallbladder. More tests and they find out my gallbladder is essentially not working. I get a surgery in January this year and the surgeon tells me it was stuck in tissue. When I asked whether it may have been endo, he said no, just shows there was a lot of inflammation. We were then finally able to start fertility treatments (after over a year of weird health findings). Didn't work, diarrhea and right side tightness still there. My RE had suspected it all along, but was only willing to check it out after 3 failed cycle. He told me after the surgery (which lasted 2.5 hrs) he never expected that much (bowels, bladder, liver and diaphragm were affected), but my uterus was beautiful, no blockage! I'm definitely not the most typical endo case though. My mom had endo and was more typical, with extremely heavy period which ended in a hysterectomy at age 37 (she had us in her mid twenties). My sister was also diagnosed, but got pregnant her first month of trying even though she was told it would likely be difficult for her.

betwise · July 2015

@Drove2u the only way to know for sure is lap surgery and I'm sure you can have endo without symptoms but for the most part you have clear symptoms. Endo is thought to be autoimmune so it can effect all kinds of stuff in your body. I am like @KidShrink and have terrible bowel movements during my cycle and I have terrible periods. Very terrible with awful pain during ovulation and my cycle.

Drove2u · July 2015

Oh wow you guys!! I'm sorry you had to go through all that but glad it got fixed. Thanks for the info.

KidShrink · July 2015

@betwise : that's interesting that it's thought to be autoimmune...I'll have to look more into it. I've had a series of strange allergic reactions since I was 13. Cold (yes, and I live in Canada), one bout to sun (thankfully not anymore), alcohols (which partly explain the not drinking part). Wondering if that's all related now...
I have days where I think that maybe this whole baby thing isn't working out of pure natural selection. Let's face it, how great of an idea is it to pass on my crappy health genes :l

Drove2u · July 2015

Oh @KidShrink don't think of it that way. :-( because it's not true. It's going to happen to you.

betwise · July 2015

@KidShrink there is kind of a "battle" between doctors who think it is and doctors who think it isn't. Makes sense in my opinion that it's autoimmune bc it can be linked to lots going on in your body.

Colleen0516 · July 2015

I'm not sure if I have endometriosis. I have a gut feeling that I do but I'm not positive and my doctor isn't ready to do the surgery. He thinks I'm too young and too early into this. We're trying IUI a few times first.

I'm sorry if this is too personal to ask, but what kind of pain to you experience during sex?

I have painful sex and felt like there was something wrong with me. I have had every test under the sun done, all can back with normal healthy results. Only thing I haven't tested for is endometriosis.

Sometimes it hurts so bad during sex, that we have to stop bc I'm in tears. But in not sure if it's the "endometriosis pain" bc I'm not sure exactly what it is. It's hard to talk about it with other people bc they don't know the feeling.

betwise · July 2015

@colleen0516 I don't mind answering. The pain during sex is mostly when he has control of how deep he goes. When it is really deep and it feels like a burning, stabbing pain up higher not like towards the opening or lower. That is for me personally so it may be different for others.
How old are you? I don't know all that the doctor said but having surgery has nothing to do with your age. It has to do with an early diagnosis and helping you get on the fast track to keeping it under control. Are you seeing an RE? For me the endo diagnosis was about pain and not about fertility. I have had 3 lap surgeries and the last one is bc my RE wanted me to be "cleaned out" before I started treatments and IUI.
What other symptoms do you have? How long have you been TTC?

beckihall · July 2015

My husband and I were trying to conceive for 9 months when my gynecologist suspected I had endo and scheduled a laparoscopy. Since we were also having trouble conceiving he did a tubal dye infusion and that's how I found out I have endo and both my tubes are blocked. Just started IVF 5 days ago.

Drove2u · July 2015

Does endo always cause tubes to be blocked or is that just one of the things that happens?

betwise · July 2015

Not always. Mine were not the first two surgeries and only one the third surgery.

Colleen0516 · July 2015

@betwise thank you!
I am seeing a RE, I am 29.
I told him that I have pain sometimes during sex and with my periods but it wasn't as bad when I first consulted with him 6 months ago. Since then, it has become progressively worse. Like I said before, to the point of tears, where we need to stop. It's a stabbing and burning sensation. Some postitions are better than others, but once it starts, I takes a while to go away.
I think I need to talk again with him about it all. Thank you for being so open!

betwise · July 2015

@colleen0516 yea I would bring it up with him again and explain its getting worse just to see what he says. You are young but not that young as far as fertility goes. Most doctors say over 30 is when your fertility goes down. I just hate for you to pay for more IUI's when there is a problem. Endo doesn't keep you from having babies but it can hinder you for sure depending on the stage you have and where all it is.
Good luck! I hope things get better for you guys and if you have it that you are diagnosed soon.

KidShrink · July 2015

No blocked tubes for me. The inside of my uterus and tubes were fine (I actually had a thin lining). It just everywhere else where it shouldn't. I've also had some occasional mild pain during intercourse, but that was never my main problem (GI issues being worse; I was almost diagnosed with IBS).

Drove2u · July 2015

What kind of GI issues if you don't me asking.

KidShrink · July 2015

Diarrhea (up to 4-5 times on the morning of CD1, then slightly decreasing as flow decreased). That seemed to be associated with fatty liver disease and gallbladder problems, which meant that some foods just went right through me and gave me awful cramps. For a few months this was a constant, but it was always 100X worse when having my period.

MKLEWIS2010 · July 2015

I was also almost diagnosed with IBS instead of Endo. However thankfully the GI thought about that and actually referred me to a new OB that in turn referred me to an RE. I had a pressure like someon was stomping on my uterus with construction boots that's the only way I could explain it and then I always felt like I had to use the bathroom and I couldn't. This usually around my period initially and then I started getting painful abdominal pains even after my period ended. I ended up in the ER because I didnt know what was wrong. Apparently there was a mass the size of an orange on my ovary, which when I finally went to the RE she noticed and did the lap to remove it and other scar tissue.

Want a personalized experience?

Endometriosis

Re: Endometriosis

Choose Another Board

Search Boards