Endometriosis

riveridgional · August 2015

For those of you who have confirmed endometriosis, I am just wondering what led your doctor to do a laparoscopy to confirm the diagnosis. Did your doctor see anything on an U/S, HSG test, etc. or was it one of the routine tests performed at a certain point in your treatment? I understand it can be checked or seen at the same time your doctor may be looking for confirmation of a blocked tube or to remove a fibroid. However, I'm wondering about cases when the lap was performed specifically for endometriosis suspicions. Thanks in advance for your help!

Knottie36622473 · August 2015

All my tests were normal. No tubal blockage, hormones normal, good egg reserve, no PCOS or anything. If this iui doesn't work my doctor is doing a lap surgery for the following reasons: 1.) infertility even though I should be conceiving 2.) short luteal phase 3.) severe menstrual cramps...these 3 things have made him believe I have endo.

KidShrink · August 2015

On my end, I had very light periods, but weird pains in unusual places during my period (initially pain when I peed only during my period, an osteopath fixed the pain, but didn't make the endo go away), and pain all over my right side. My family history was also positive for endo (mom and a few of her sisters, my sister as well).

betwise · August 2015

My original lap (I have had 3) was done bc I was having extremely bad periods with major pain. They ran a few tests that showed no cyst or anything so they suspected I had endo from all my symptoms. The only way to confirm is lap so they suggested it and then I had it done and I did have it. Pretty bad. Every surgery since has been done knowing I have endo so it was a cleaning out at that point.

przemosbabe · August 2015

My lap was done because when there is no other found cause for infertility, they automatically assume it's endo and in my case it was true.

babyexpress · August 2015

przemosbabe said:

My lap was done because when there is no other found cause for infertility, they automatically assume it's endo and in my case it was true.

Did you have any symptoms at all? Bad menstrual cycles, severe cramps, abnormal vaginal bleeding, etc? I get severe cramps and have been on prescription ibuprofen for years because of it. I also got severe cramps for 2 weeks on last IUI + clomid cycle and I'm beginning to think I could have this.

riveridgional · August 2015

Thanks for your responses!

@babyexpress I get severe cramps though strangely they have been (overall) less painful as I've gotten older. I do, however, basically take prescription strength ibuprofen for all cycles (usually combined with Tylenol) except the last 2 or 3. Also, I have been thinking it strange that my tampons typically are only half full or one-sided the last year or so and during my HSG test I was informed my cervix is titled, which would explain the tampons. Anyway, I googled causes of tilted cervix and endometriois is one. I also spot about 2 or 3 days before AF and, though I ovulate on my own, I didn't respond to Clomid (only one follicle on my monitored cycle). Apparently, I've learned these are all symptoms. I don't have pain any other times (ie intercourse) that I can recall, though, honestly, I do consider myself to have a high pain tolerance and wonder if some discomfort I feel is really "pain."

Anyway, I was just curious to know if it was something I should speak to my RE about. At this point, though, I'm thinking it doesn't really matter. I'm only giving myself 1 round of injectables before moving to IVF, so I guess it won't really matter if I have endometriosis. As far as I know, it won't affect IVF.

babyexpress · August 2015

@riveridgional Its all really good information to know. My RE said I can take Tylenol also so I immediately went out and bought extra strength so I can use after IUI. Last cycle i used nothing and just dealt with the pain. I did have to go out and get a heating pad. Me and DH had a weekend getaway and I made him stop at Walgreens to get a Heating Pad because I couldn't sleep at all because of the pain. I have had some unpleasant feelings during sex, but nothing I have thought to much about. Really just thinking it was going to deep, sorry for the TMI.

When I read some of these other signs online, I don't feel like I have any of these consistently (maybe 1 or 2 every now and then):

Gastrointestinal: bloating, constipation, or inability to empty bowels

Abdominal: abdominal fullness or cramping

Also common: abnormal vaginal bleeding, infertility, nausea, sensitivity to pain, or irregular uterine bleeding

riveridgional · August 2015

@babyexpress I have the same thoughts when I feel discomfort during sex. I've always wondered what they mean by painful intercourse. Though, I really do think it's just feeling my cervix being touched?? TMI, I know, but hey...world of infertility!

Maybe talk to your RE about it next time you see him. I think I will too, but also tell him my thoughts of it not really mattering.

Knottie36622473 · August 2015

I have a retroverted uterus too. I don't think I did growing up because I was never told this is any of my yearly exams until I started having severe menstrual cycles. Even today during my U/S the doctor was like "your uterus is totally retroverted". I know that can be an indication of scarring from endometriosis (the scar tissue can force it out of position) Like I said-I don't think I was born this way because I didn't hear about this until about the time my periods became abnormal which was a couple years ago.

Knottie36622473 · August 2015

Here are some excerpts on my symptoms associated with endometriosis (I have a Luteal Phase defect and Retroverted Uterus):

https://www.womenlivingnaturally.com/articlepage.php?id=196

On pelvic examination, I had a retroplaced uterus and my doctor said I had endometriosis. How common is this?

A uterus tilted backward is not a specific sign of endometriosis; however, when a patient has endometriosis behind the uterus during the years of menstruation, endometrial implants eventually will form and attach adhesions to the uterus and the pelvic wall, which can displace the uterus. A retroverted uterus has been found in 47 percent of patients with documented endometriosis, but in only 17 percent of women without endometriosis. Whether this is a cause or an effect is unknown. However, the experts in the field agree that the presence of a retroplaced, fixed uterus and pelvic pain along with other symptoms of endometriosis definitely deserves further investigation.

I was told that I have luteal phase defect. What is this and how common is it?

The luteal phase is the second half of the menstrual cycle. The menstrual cycle traditionally has been divided into two parts. The first two weeks have been called the proliferative phase. This is the time that the ovarian follicle is being developed. The lining inside the uterus is proliferating and getting ready for ovulation and possible implantation.

The second half of the menstrual cycle, or the last two weeks, is characterized by a dramatic increase in the hormone progesterone, which is produced by the part of the ovary which is called the corpus luteum. The presence of progesterone is very critical for proper implantation of the fertilized egg and adequate amounts of this hormone are necessary for implantation.

In patients with endometriosis, several studies have indicated that there is a higher incidence of this luteal phase deficiency or luteal phase defect. Another problem which has recently been described in patients with endometriosis is the so-called luteinized unruptured follicle syndrome. In this case, the patient will ovulate but the egg does not come out of the ovary and it becomes entrapped in the ovary, which can obviously account for infertility in some of the patients with endometriosis.

KidShrink · August 2015

Hmmm, I think I've also had all of these! Plus a right ovary that was 'hiding behind my uterus, but you know that's a normal variation'...that wasn't normal...it was twisted and stuck in a massive amount of endo, making any ovulation from the right side completely useless...

Knottie36622473 · August 2015

Also, some doctors may not take it seriously. My previous RE was like "Oh just get pregnant and then we will put you on meds to help with the endometriosis"...Ummm I'm seeing the RE because I CAN'T get pregnant...most likely because of the endo. Some doctors avoid doing a lap surgery. I don't know why.

My new RE said it immediately in my consult..."you probably have this, we are just doing 2 cycles under my supervision and if they don't work I'm going to schedule you for lap surgery."

babyexpress · August 2015

Thats interesting you got 2 totally different opinions. Well I will probably only do 3 rounds of IUI and then move to IVF if necessary. If the Endo would not matter with IVF, than i will probably want to avoid the lap surgery anyways.

Knottie36622473 · August 2015

That's what I'm trying to decide. Avoid the lap surgery and just to IVF or get it done, try IUI 1 or 2 then go to IVF? I've heard if it's stage 1 or 2 and they remove it, you most likely can conceive naturally or via iui within 6 months after the lap surgery. My RE said if it's stage 3 or 4 he recommends just going straight to IVF after the lap surgery. I'm sure clearing it out would help conception even with IVF though.

Anyone have thoughts?

KidShrink · August 2015

My endo is pretty severe (bowels, right ovary, gallbladder and liver were covered, some all the way to my diaphragm and my bladder was covered, with an implant going in the wall of my bladder). The lap took 2.5hrs...RE has agreed that we have 6 months with 'optimal' conditions, and so we're doing max 2 IUI with injectables, and then moving on to IVF (at some point in October most likely).

Knottie36622473 · August 2015

@kidshrink is the procedure safe? Were you scared at all before hand? I've never been put under. I'm nervous.

I feel like I still want to do it even if I go to IVF because you want optimal conditions for the embryos and I've heard endo can still impact IVF results too if it's severe. My insurance covers the lap surgery...but not IVF...so I figure I need to do everything I can to make sure I don't get to IVF or if I do IVF that it works the 1st time.

KidShrink · August 2015

@Knottie36622473 : this was my second lap within 6 months. I had one in January to remove my gallbladder (polyps, not functioning) and was told it was stuck in 'tissue', but the surgeon said it wasn't endo, which I don't believe. That surgery was actually much worse then the lap I had for endo. This last one (in July) was actually a combination of hysteroscopy to fix the slight t shape of my uterus and transvaginal endoscopy where they were looking at the outside of my uterus and my ovaries. This was supposed to last 15-20 min. They realized doing the endoscopy that I had massive endo, and so converted to a laparoscopy, which I was told was highly probable, and that should have lasted about 40min...
To be honest, the worst part of the surgery for me was the hysteroscopy as they essentially cut through some muscle tissue tightening the base of my uterus which impeded proper blood flow and led to a thin lining. That was like worse period ever times 5 (I was also used to very light periods). Otherwise, I took the minimal amount of pain meds they recommended and was fine. I just took a week off to recover, and was perfectly fine to start again the following week. I just couldn't work out for 3 weeks and still need to be careful. But well worth it for me as a lot of my weird pains and bad GI symptoms are much better or gone.

betwise · August 2015

My RE suggested I go ahead and have the lap before we started any kind of treatment since we knew I had endo. My insurance covered the surgery so that was his very first suggestion. He said, along with my OB, that if you have endo it can hinder any kind of reproductive therapy, IVF or IUI. I have stage 2 but I have it everywhere, all over my internal organs. If you can afford the surgery or insurance covers it then it's probably the route to go so you can start from "ground zero" knowing that you are 100% ready to implant and carry a child to term.

The surgery is painful but it's not terrible. I have had 3.

Knottie36622473 · August 2015

@betwise. You have a great RE if he did it before any sort of treatment. My experience with RE's is that they want to avoid it or don't want to try it until a certain number of failed cycles.

betwise · August 2015

@Knottie36622473 he is really good! I was surprised at first but then after he explained it made sense. I'm glad I had it done though bc I had a tube blocked and didn't know. I had surgery less than 2 years before this one so I didnt know it had come back so bad. It would have made TTC more difficult.

Drumski · August 2015

I have 4 laps done for my endometriosis.

The initial lap was done over 10 years ago when my OB found large cysts via ultrasound on my ovaries. It was so painful.She went in and confirmed it was endometriosis. Since then, my endometriosis has been very active causing a lot of pain (especially when my bladder was full) and my doctors have gone in to clean up, remove scar tissue and cysts.

Knottie36622473 · August 2015

@drumski what stage endo do you have? Is that been the cause of infertility?

Drumski · August 2015

It's probably my fault but I've never asked for a level. I was diagnosed 12 years ago. At one point it spread up my bladder. I have lots of scarring and "windows". Endometriosis is one of the reasons not the only cause. @knottie36622473

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