Comments on: Diagnosis: Endometriosis

By: Jennifer B

Jennifer B — Tue, 17 Jan 2012 02:46:11 +0000

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!

By: KT

KT — Thu, 29 Dec 2011 20:31:30 +0000

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.

By: West Van Barbie

West Van Barbie — Mon, 12 Sep 2011 00:28:42 +0000

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

By: Melissa M.

Melissa M. — Tue, 02 Aug 2011 18:21:44 +0000

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!

By: Mandy S

Mandy S — Fri, 25 Feb 2011 17:58:49 +0000

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

By: Rachel Rodrigue

Rachel Rodrigue — Wed, 16 Feb 2011 13:02:30 +0000

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!

By: Brandilynn

Brandilynn — Thu, 19 Aug 2010 18:56:37 +0000

What birth control do you recommend. They all make me sick

By: andrea

andrea — Tue, 29 Jun 2010 06:57:29 +0000

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.

By: Jasmine

Jasmine — Wed, 10 Feb 2010 18:26:49 +0000

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!

By: Maria

Maria — Sat, 21 Nov 2009 19:08:11 +0000

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