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Wednesday, July 26, 2006

Diagnosis: Endometriosis

Diagnosis: Infertility Caused By Endometriosis
by Royalyne

What Endometriosis Means and Its Impact on Fertility

Endometriosis is a condition in which endometrial tissue (the tissue that lines your uterus during your cycle and is shed during menstruation) occurs outside of the uterus. It can be found pretty much anywhere inside your pelvic cavity: fallopian tubes, ovaries, bladder, bowel, etc. The adhesions can cause varying levels of pain during menstruation or intercourse, from no pain at all to debilitating pain. As the adhesions grow they can impact thetissues they are on. Endometrial adhesions on the ovaries can cause endometrial cysts (called endometrioma). Adhesions on the bladder or bowel can infiltrate and obstruct. Adhesions on the fallopian tubes can infiltrate or constrict and result in scar tissue forming. In addition, scar tissue on the fallopian tube can prevent eggs from passing into the uterus to implant (which can lead to an ectopic pregnancy). Endometrioma can affect ovulation and scar tissue on the uterus can prevent implantation or lead to miscarriage and premature labor.

There are varying levels of endometriosis, from level 1 which usually causes no symptoms to level 4 which can seriously impede fertility.

Diagnostic Process

Endometriosis cannot be seen on ultrasound or diagnosed with blood testsor pap smears. The only way to diagnose endometriosis is to undergo laparoscopic surgery. During the surgery, a small incision is made in the abdomen for a tiny camera and a second incision is made to facilitate a tube used to pump air into the abdomen. Inflating the abdomen allows more space and a better view of tissues. During surgery the adhesions can be removed.

Treatment Options

Many doctors will also recommend Lupron injections. Lupron basically "kills" the adhesions by halting the growth for 6 months. Endometriosis is also controlled with birth control pills. Birth control pills can be used to treat symptoms or to prevent/control a reoccurrence after surgery.

Personal Experience

My endometriosis was level 4, affecting one ovary with a large endometrioma. The endometrioma pulled that ovary down and behind my uterus and twisted the fallopian tube. There was also a small adhesion to my bladder. I had debilitating pain during menstruation--it was so bad that I couldn't walk and often vomited from the extreme pain which was not reduced by any OTC or prescription painkiller. My laparoscopic surgery lasted over 3 hours (I was scheduled for 1 hour of OR time) to remove all the adhesions and re-anchor my ovary where it belonged. I had spent 5 years on triphasic birth control pills, which kept me symptom-free for the duration. I chose against Lupron because I didn't feel the side effects were worth it for me.


Thalia said...

A few additions.

Endometriomas may also be called ' chocolate cysts' by your doctor due to the colour of blood they contain.

The reason endometrial tissue may cause pain is that

Thalia said...

Sorry about is the full post

A few additions.

Endometriomas may also be called ' chocolate cysts' by your doctor due to the colour of blood they contain.

The reason endometrial tissue may cause pain is that it responds to your body's hormones just like the endometrial tissue that grows in the womb, so it increases in volume and then can liquidify into blood in your peritoneal cavity.

One correction: the level of endometriosis is now a relatively outdated measure, partly since it doesn't correspond well with symptoms as felt by the patient. Someone can have excruciating, constant pain with no real growth of adehesions, or can have extensive growth with absolutely no pain, not even during their period. The important diagnostic factor is the extent of adhesions when seen in a laparoscopy.

The reason that lupron or its analogues, or birth control pills, halt endometriosis is that they inhibit the production of estrogen, and estrogen is what causes endometrial tissue to grow. Thus the long term suppression of endometriosis by any method, but particularly with the use of zoladex or lupron, has the risk of osteoporosis.

There is some evidence that treatment with lupron/zoladex and the like can improve the response and the pregnancy rate with women with endometriosis in subsequent IVF cycles. This is hypothesised to be because such treatment 'resets' the endometrium in the womb to be more receptive to implantation.

There are multiple online resources available, e.g.,

Anonymous said...

Thanks for the additions, Thalia! You are so very knowledgable, it's good to have you around. (sulks and vows to do more research beyond what her doctors said before she writes something so important again)

Unknown said...

Thanks Thalia! I too, decided that the risks didn't outweigh the benefits. I am tiny as it is, and at high risk for why chance it? Plus, who wants hot flashes anyway? I really shouldn't be sharing menopause with my mother! Anyway, it's good knowing I'm not the only one who turned tx down. I'm currently on Yasmin to control the growth post op. Thanks for a great post!

Anonymous said...

Hi Melissa,

I had recently done with my laparoscopic cystectomy for my endo. My gynea has put me on Yasmin. May u share with me ur experieces after on this medication pls?

thanks & regards,

alprazolam online said...
This comment has been removed by a blog administrator.
Keleigh said...

Hi - My friend pointed me to this blog... what a great wealth of info! :)

I DID do the Lupron route, and I would highly discourage it. I was completely miserable (and humiliated when I would suddenly start pouring buckets of sweat for no apparent reason) and immediately following, began breaking bones. I had never broken anything before in my life. Suddenly I was regularly breaking fingers and toes... I even broke my foot!

One more note of warning... I have both PCOS & endo. My OBGYN put me on Clomid to try and force ovulation. Clomid is one of the worst things you can do for endo. It's mostly estrogen, which is like fertilizer for endo. I had been pain free up until I took Clomid.

Sorry for the downer post, but 7 years of infertility treatments ravaged my body, and I just want women to be well informed.

Anonymous said...

Keleigh, thank you for sharing your information regarding Clomid. I also have endometriosis, had surgery 3-1/2 years ago, the endo was everywhere. I've been trying to get pregant for over a year. For the past 6 months I've been treated with Traditional Chinese Medicine, and have faith that this will eventualy work for me, but occasionaly my faith wavers and I get frustrated that I'm not getting pregnant immediately.

Last week I spoke with my Dr. and he said I could consider going on Clomid. I know that I'm ovulating every month- so why would he suggest that? Especially considering how bad Clomid can be for endometriosis??? It reinforces that you have to do your own research.

sarah said...

I have had irregular and painful periods for years and have been on BCP for the last 5. I was diagnosed with "classic" endometriosis last Sept after 9 months of increasing abdominal and low back pain and increasing bleeding.My Dr. had me try Lupron 3 month inj. He added a progesterone supplement to minimize the side effects. I felt great for 3 weeks. Then my symptoms returned with a vengence. My bleeding is continuous, and my pain has gotten unbearable. After I sluffed off a huge chuck of my uterine lining, my Dr did an endometrial biopsy which showed a high level of estrogen and so conviced me to get another 3 month lupron inj. I am an idiot!!! My pain is so bad I can hardly stand or walk. I want a hysterectomy and bilateral oophorectomy but I cant afford to take any time off from work. Any suggestions for alterative treatments?

Christa said...

Wow, I could've written this excerpt. I have level IV almost level V. I had a very large endometrioma on my right ovary that they removed via laproscopy. I chose to go on lupron after my second lap. There were lots of side effects that weren't fun, but in the end, I think it was worth it and may be the reason I got pregnant with Ella. I would love to talk via email!

Lollipop Goldstein said...

Hey Christa--want me to connect you to the author?

Anonymous said...

As someone who also has endo (and PCOS to boot), I'd never recommend Lupron Depot to anybody. I am glad there are people who benefit from it, but I've sadly found they are few and far between.

One note is that endometriosis is both a sneaky and recurring issue. As noted, pain and amount of endometriosis often do not correlate, and many women may not discover they even have it until they cannot conceive.

I also did several rounds of Clomid last year and failed miserably -- lots of cysts, no ovulation. It was then that they did follow-up bloodwork to check my sugar and, lo and behold, I have polycystic ovarian syndrome (PCOS) too! Nothing makes a 24-year-old feel so young as being resigned to IVF and referred to a high-risk obstetrician.

I also apologize for the "Debbie Downer" comment, but I am also so glad to find this blog. I started a support network for young women with endo and their loved ones and it's just now getting rolling. Perhaps we can be on each other's blog roll? Feedback at my group's blog,, is much appreciated.

Chin up, endo sisters. x - Chanel

pregnantpause said...

Wow. I had no clue. I had the Lapro two years ago. My doctor wanted me to go on Lupron afterwards but my insurance didn't cover it. I couldn't afford the $600 per injection each month. My doctor also said the only way I could get pregnant was to do IVF because my husband also has poor morphology. He never said that BC pills would be an alternative or that I might have to have another surgery. Now, two years later we are finally able to afford IVF, but I'm afraid the Endo will come back to haunt me. For the last two years I have been symptom free and regular in my cycles (I never was before), but now I am worried that I will have to go through surgery all over again.

This is Me said...

I have been trying to get pregnant for several years, and was just diagnosed with endo. It was successfully removed, had not affected my tubes, and now my fertility doc says we need to do Clomid and IUI right away. My husband and I are wondering if we can/should just try getting pregnant NATURALLY since the endo is all cleared up now. There may be an egg quality issue, but not sure. Any thoughts? Is Clomid and IUI really the only way to go?

Anonymous said...

I had laproscopic surgery at the beginning of Jan 09 and was diagnosed with mild endo. It was on the top of my uterus, but my tubes and ovaries were clear. I have been doing the research, and it seems to show that Clomid by itself does not improve pregnancy rates in endo patients. Clomid and IUI should be attempted first, and if it doesn't work after 3 to 4 tries, then try IVF. Does anyone have differing information or contrary suggestions? This is what I think I'm going to be doing. I've been trying for 3 years using temp and urine strips. I just got an OV-Watch, too.

devon said...

Hello All,
After an HSG showed both of my tubes were blocked, I had a LAP procedure last Monday. I have (had) Stage 4 endo and didn't even know it. I go in for my post op appt next Monday and she wants to put me on 6 mths of Lupron. I've been reading up on it and it sounds seriously scary. My husband and I want a baby so bad and we've been ttc for 2 years. I don't know what to do about the Lupron. Is there another option??? Is it really as bad as I've heard???
Thanks for any advice. I'm really scared.

aliza said...

don't know if anyone can give me some advice here- or melissa is there someone else out there perhaps?- but i have what is believed to be a golf ball size endometrioma on my ovary. i was told i could wait and see if it goes away on it's own. i did one failed iui cycle. cyst is still there, same size. and i'm wondering if having lap will increase my chances of getting pregnant? any thoughts...?

Anonymous said...

Aliza, I don't know if you have already made a decision about what to do about the golf ball sized cyst you have or not but I thought I would throw in my two cents. I would only wait to see if the cysts will go away if you doctor gives you medication to help reduce the size of them. My doctor gave me something (forgot the name sorry) and it helped to drain the fluid from the cysts. But it usually only works on smaller cysts. A cyst the size of what you are talking about is nothing to mess with in my opinion. I had one about the same size rupture. It is the most painful thing I have ever experienced in my entire life. I thought I was going to pass out from the pain and eventually collapsed in the floor. Thankfully I had someone working with me that day that called an ambulance. Ruptured cysts can be very dangerous. I wouldn't wait with a cyst that size. I had lap done right after I had that ruptured cyst and my pain was immediately relieved. In my opinion, it can't hurt to have the lap done if it's covered by your insurance. The sooner you can have the lap done the less likely the endo is to cause scar tissue and therefore giving you a better chance to conceive. Hope that was helpful.