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.
33 comments
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
Sorry about that..here 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.,
http://www.medceu.com/index/index.php?page=get_course&courseID=1417&nocheck
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)
Thanks Thalia! I too, decided that the risks didn’t outweigh the benefits. I am tiny as it is, and at high risk for osteoperosis…so 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!
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,
stephanie
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.
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.
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?
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!
Hey Christa–want me to connect you to the author?
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, endosucks.wordpress.com, is much appreciated.
Chin up, endo sisters. x – Chanel
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.
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?
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.
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.
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…?
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.
Hello! Thank you for the nice visit to your blog! This is my first visit here. I’ve been feeling very sad and discouraged about my whole inability to be able to conceive lately. My name is Maria and I’m forty three. I met my husband on a Catholic Singles website and we were married on June 16th, 2007. We have been TTC ever since our wedding with no success. Eight months after marriage I was diagnosed with endometriosis stage four. I’ve had two surgeries so far. Still no success being able to conceive. I want you to know that my heart goes out to you and you are in my thoughts and prayers.
May God Bless you!
Maria Therese In Mass
Hello- At the end of Feb. 2010 I will be going in for my diagnoses lap. I am very nervous about the procedure. My dr. said they may be injecting a dye via the vagina to check for blockage in the ovary, but I have been unable to find any information about this- and unfortunetley did not ask what it is specifically called, anyone have any idea what this entails other than being completley knocked out with my legs in stirrups!? I will post after surgery!
I agree with the whole stage thing being outdated. Apparently I have stage IV too. However, what you describe is so tiny compared to the adhesions in my “plastered” pelvis, blocked tubes, twisted ovaries, attached to my back even, adhesions and my esophagus and up to my collar bone and actually “diaphragmatic endometriosis” (the diaphragm helps you breath) which also involves my lungs as well. How are our conditions both stage IV? Stage IV is the highest you can rate it, but it really doesn’t make sense. But, thankfully, I AM blessed to be able to carry on a semi-normal life (minus children) if I don’t work too hard, and this is half the time.
What birth control do you recommend. They all make me sick
Hi, today I’m feeling quite confused and upset! After years of feeling constant pain in my lower back and abdominal area, irregular, light and sometimes brown irregular periods I found a gyno who thought my symptoms were caused by endo. I had a diagnostic laparo yesterday. My gyno said everything was functioning and there was only a small amount of endo. Not that I wanted something to be wrong, but I’m tired of the pain. I’m tired of not knowing when I will have a period! I went through a process of ilimination, having my gallbladder removed, checked for kidney stones, and had a scope view the inside of my bladder. What next??? Now I’m on pain meds so I’m not sure if the pain has subsided, but if it hasn’t what to do next?? I’m calling my doctor when the office opens this morning to be sure I understand her discoveries.
If any of you have experienced this, please let me know as I am truly feeling like I might be crazy!
I just found your website through a fellow blogger. I found on in the Fall that I have endometreosis. I also have it on my bladder. I’ve had AWFUL periods and cramps {very similar to yours} all my menstrual life. Thank you for this posting. <3
I have endometriosis too – happy to have come across this website. I just wanted to mention that one of the most empowering things I’ve done for myself is to become a member of the Endometriosis Association (www.endometriosisassn.org) and have read their books on endo, which I learned a lot from. Good luck to all my endo sisters!
I love that you have taken the time to write about endometriosis and the obvious negative effects it can have on women’s fertility. There are however several inaccuracies in the post that really should be corrected to prevent further spread of endo myths we now know are not true. It just prevents women from getting the treatment they need.
-Endo can be found anywhere in the body (including the lungs, brain, eyes, sciatic nerve and even in muscles and skin), however most commonly it is limited to the pelvic cavity. It also isn’t limited to women; there have been some rare cases where men have battled this horrible disease too.
-Endometriomas are cysts full of endometriosis tissue and again can happen anywhere but occur most often on the ovaries. I personally had an endometrioma in my abdominal wall muscles.
-The stage of endo you have has no correlation to the amount of pain you have. You can have little visible disease and horrendous pain and infertility or stage IV with zero symptoms and only learn you have it when you have a totally unrelated abdominal surgery.
-The only way to diagnose endo is via laparoscopy WITH biopsy of all visible lesions. It is vital that the biopsied tissue be intact and undamaged (ie with proper excision techniques, not with a laser.)
-Lupron does NOT “kill” endo lesions. It shuts down the ovaries via the pituitary gland but it doesn’t shut down the lesions- which make their own hormones anyway. Lupron can temporarily reduce symptoms but it does not treat or cure the actual disease. The only way to really treat the disease and and remove the lesions is through a thorough excision of ALL visible disease. Laser, cautery and ablation just burn the surface of the lesions, leave the “roots” to continue to grow, prevent biopsy and proper diagnosis and cause more issues with adhesions. Hormonal treatments such as Lupron, Danazol, birth control pills etc can only help manage the symptoms while you take the drug and can have serious and sometimes permanent side effects. Hysterectomy is also not a cure as the uterus and ovaries are not causing the disease.
Again, I really commend you for trying to build awareness for this horrible disease, but please do your research first! Most gyns just perpetuate these myths even when the medical research is there telling us it isn’t true. Much love and baby dust! xox
I just wanted to add in my two cents. My doctor recently found a baseball-sized fibroid in my uterus. Before I had surgery he gave me a three-month shot of Lupron to shrink the fibroid and minimize bleeding during surgery. I did have hot flashes, but they only lasted a few minutes and truthfully, they aren’t that bad. During surgery he also found Stage 2 endo (which was a surprise) and removed it. Hopefully the surgery was a fix for our infertility!
Not sure if anyone said this but a little less than half of the women that have endo get it back after a year. Such a depressing statistic.
Hi, I’m so glad to have found a website from someone who frankly discusses endo! I go for my first lap in less than 2 weeks and I keep worrying that I’m just crazy and it’s all for nothing! I’m wondering if anyone has ever experienced pain during ovulation with their endo? That is one of my most painful symptoms and the pain lasts from about day 8 through to day 15 and then I get a break and the back pain starts again shortly before my period arrives. Is painful ovulation also a part of endo??
Thanks!
I am so glad that I found this website, I have been having pain in my right side for a year now, it increases into full flown cramps during my cycle. The cramps I get are so bad that I take a lot of Pain meds to help dull them. I finally found an Obgyn that listened, he ruled out the gastro side of it, now we are working on the setting the procedure up to look for Endo….. this has helped me! Thank you!
Hi all, thanks for ur observations and experiences, I had a laprascopy surgery in june and the cyst wasn’t removed but the content was drained,my fear is that it will develop again,this is the second time I’ve had this surgery,now am thinking of taking clomid but am scared the cyst will form again, I need ur advice. Am so worried.
I had my sugary 7/26/12 and I’m on my first round of Lupron. I have another round, but I told my doctor I don’t want it. I hate the hot flash, mood swings, and the depression it gives me. My surgery was also supposed to last an hour, but last for 3 hours and they couldn’t finish. Both my left and right ovaries and fallopian tubes were stuck together sitting on my colon because of the Endometriosis. I had pain since I had my first period when I was 9 years old. I would go to the ER and other doctors and they all would say the same thing. (It’s normal). I vomit; I can’t work or be in school for the 1st 2 days of my period. I’m in extremely bad pain and over the counter didn’t work. I would go thru a big pack of pads with in the 7 days of my period, sometimes I would have to go and buy more.
Before the surgery my Doctor did and ultrasound and saw I had 2 cysts. Because of that I had to have surgery, that’s when she discovers it wasn’t a cyst, it was my right ovary that was full of endometriosis and it was the size of a grapefruit. Also my right fallopian tube was badly damage. She then darned the endo out of the ovary and removes the right fallopian tube. She was unable to continue because I was losing too much blood. She told me I have stage 3 or endo, but show signs of stage 4.
Now I am taking my Lupron shot. And I am schedule to do an [HSG} Hysterosalpingogram; which is a procedure done under local anesthesia. What they will do is push liquid bye thru my left tube, to make sure it is open and flowing. Once that test is done; my doctor will then determent if I need to have a second surgery to finish what they couldn’t finish during the first surgery. I believe I will end up having the 2rd surgery only because I am feeling some discomfort on left side and the pain is increasing. But I’m happy that I serve a God the provide miracles.
I hope you guys understand what I put because I was having hot flashes typing this and it’s had to focus when I have my hot flashes.
I’m so sorry to hear all the bad experiences with Lupron…it was the only hormonal treatment I could tolerate. I was sad when my 18 months with it were up (although I did feel that it weakened my pelvic floor as a yoga practitioner). I am starting IVF in a couple months, after surgery for endometriosis and HSG revealed that adhesions scarred a fallopian tube shut. I wish my female ob/gyn had communicated more clearly the risk to pregnancy over the 4-5 years of treatment…despite not having diagnosed my severe endometriosis correctly, my insurance also refuses to cover it since I’m single and using donor sperm, so the entire condition is costing me at minimum $26k. Boo!
I had a 17cm cyst in my left ovary, it was the most painful thing ever. They said I was a stage 4 and it would be worse if there were higher stages. When I got my lap done, they removed the ovary and the tube and burned 3 spots on my right ovary. They had to leave the spots on my bowels unfortuntely. Good news is, I recovered so well that 2 months after the surgery I became pregnant naturally. I never thought it would happen, neither did my doctors. They thought i would have to go through IVF. I’m 10 weeks now and things are looking good so far so I just wanted to give some hope to women out there.
Ah!! Lupron does not “kill” endometriosis! And adhesions and endometrial impants are different things. Lupron will do nothing for existent adhesions (also called scar tissue). Also the top specialists stay away from Lupron because it’s controversial (Google the lawsuits, they’re all public). Research please!!!
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