The Personal Side to Endometriosis

This month is ‘National Endometriosis Awareness Month’. Instead of discussing its medical aspects, I thought it more appropriate to discuss the personal side of endometriosis.

Endometriosis is a benign gynecological condition where the uterine lining (endometrium) grows on pelvic structures outside the uterine cavity. It is true that is ‘benign’ from that standpoint of not being a form of cancer or malignancy. However, it is a medical condition that has long-term, even lifelong implications. From a gynecological perspective, endometriosis can cause extremely painful periods, severe pelvic pain even without menstruation, painful intercourse, and infertility.

Any and all of these symptoms can affect a person’s quality of life. And unfortunately, curative treatment renders a woman sterile. Endometriosis can only be definitively diagnosed with invasive surgery; it is only with surgery that one can determine the severity of the disease and the extent of its damage. There is little correlation between the severity of endometriosis and symptoms being experienced. However, there is correlation with the extent of endometriosis and its impact upon fertility.

I, myself, have Stage IV endometriosis and have suffered from many of the symptoms that I listed above; however, I was just diagnosed a few years ago. Before my diagnosis, I had multiple pregnancy losses and secondary infertility (the inability to get pregnant after being able to conceive in the past). I underwent IVF multiple times to increase the likelihood of getting pregnant and delivering a healthy child but it never worked, even though I had a >50% chance of success with each attempt. Happily, I now have a wonderful daughter and family despite my reproductive history. These experiences have given me unique personal and medical insight into the implications of having endometriosis.
We know that endometriosis impairs fertility by causing scarring within the pelvis, thus interfering with the transport of an egg/embryo through the fallopian tube.

We know that peritoneal toxins associated with endometriosis reduce the ability of an egg and sperm to fertilize and thus IVF is often the treatment of choice (so that these toxins are avoided).

But what about lesser known mechanisms? Activated Natural Killer cells can cause decreased fertility potential in women with endometriosis. Interestingly, approximately 30% of women with endometriosis have activated Natural Killer cells. This form of immunologic implantation dysfunction is a theory proposed and successfully treated by Dr. Sher. In fact, the Sher Institute for Reproductive Medicine stands alone in its understanding, assessment, and treatment for immunologic implantation dysfunction in women with and without endometriosis.

I think back to my multiple pregnancy losses and failed IVF cycles, when no one was able to figure out what could have been the underlying problem. And while I wasn’t officially diagnosed with endometriosis until much later, I’m sure that I had some endometriosis (perhaps Stage I) at the time of my miscarriages and treatments. My failed treatments simply may have been due, in part, to activated Natural Killer cells…

In a way, I’m fortunate to have experienced the impact of endometriosis so that I can better understand a patient’s perspective. Better yet, by being a physician, I can test patients for immunologic implantation dysfunction and treat them appropriately.

Responses to "The Personal Side to Endometriosis"

1. Crystal Henson says:

   Crystal Henson says:

   April 17, 2013 at 10:28 pm

   I have been dealing with endometriosis for over 4yrs now I have not had a doctor tell me that im not fertile. They just tell me that because of me haven endometriosis it would be hard to almost impossible for me to conceive. What should I do in your opion. I really want to start my family, but im scared to find out that all my efforts will be for nothing.my partner is female so the only way I would have a child is thru ivf. Please mail me back with your opion on how I should go about starting my family.

   Reply
2. • Ria says:
     Ria says:
     April 20, 2013 at 6:25 am

     Hi doc,

     I am 31 yrs of age trying to conceive with IVF since past 3 yrs.
     Endometrioma on rt ovary was removed 4 yrs back.
     I have had 1 natural preg which got m/c at 8 weeks.
     I have had 5 IVF failures due to implantation problem.
     Now I am on Intralipids and LIT along with Lupron Depot 3.75mg.

     My question is wud lupron depot be helpful in my case(endometrioma removed) and if yes, then for how many months it shud be taken??

     One interesting fact I have noticed is that I rarely used to get sick/ill from common ailments like cold, fever etc….but since intralipids I have started getting common cold.
     I dont know the reason why?

     Thanks doc for ur support and suggestions.

     Reply
3. • Geoffrey Sher says:
     Geoffrey Sher says:
     April 20, 2013 at 1:04 pm

     Just taking IL/Steroids empirically will not solve the issue. You need a diagnosis of the type if immunologic implantation dysfunction you might have and then the timing , dosage and administration is equally important.

     I suggest you go to www.IVFauthority.com and read the articles I posted there in May 2011 on immunologic issue and also find the article on Endometriosis. then consider calling 800-780-7437 and set up a Skype consultation with me to discuss.

     Geoff Sher

     Reply
4. • Ria says:
     Ria says:
     April 21, 2013 at 8:01 am

     Hi doc,

     thnx for ur reply, I am avid reader of ur blog and posts, I already have gone thru all ur posts regarding immunological implantation failures.

     I wud like to add that I have Hashimoto’s thyroiditis >1300

     High TNF alpha and NK cells/Cytokines
     Endometriosis
     Partial DQ alpha match(4.1) with my husband
     Tubes clipped due to hydrosalpinx.

     Pls suggest If Lupron depot will be suitable to suppress endometriosis(asymptomatic, endometrioma removed)?? And If yes then for how many months shud it be taken?

     Reply
5. • Geoffrey Sher says:
     Geoffrey Sher says:
     April 21, 2013 at 11:25 am

     I do not use depot Lupron at all. I see no benefit and in fact because it can and does suppress recruitment of antral follicles, I personally pre4fer not to go there.

     Almost certainly you have NK cell activation and will need down regulation with Intralipid/steroids.

     Good luck!

     Geoff Sher
     800-780-7437 (if you wish to discuss further via Skype)

     Reply
6. • Ria says:
     Ria says:
     April 22, 2013 at 6:12 am

     Doc,

     My RE is planing for FET following Lupron depot, It is thot to help produce Beta 3 Integrin which is a major component required for implantation…

     What are ur thots on this, is it really worthwhile!!!

     Thnx a lot

     Reply
7. • Geoffrey Sher says:
     Geoffrey Sher says:
     April 22, 2013 at 1:42 pm

     Hi Ria,

     I am not a believer in beta integrin deficiency as a cause of failed implantation . That having been said, have you been tested for beta integrin

     Geoff Sher

     Reply
8. • Ria says:
     Ria says:
     April 22, 2013 at 11:39 pm

     RE says there’s too much room for error on the integrin test and its not worthwhile testing it and moreover its costly….
     But seeing the history of my diagnosis(endo, failed ivfs), she has put me on depot Lupron.

     This seems to be an endless road to me!!!
     Thnx doc for ur suggestion

     Reply