The Unrecognized Effect of Endometriosis on Fertility

 

On the eve of my fertile window, I am full of apprehension. I know that trying to conceive often conjures up all sorts of emotions and even a visceral response not only for me, but for so many women. Even though I know I am not alone, part of my experience does feel very lonely and often misunderstood.  As “those days” grow closer, my anticipatory anxiety weighs heavily on me. I am worried about the physical pain. I am also worried about the disappointment, frustration, and emotional pain likely to occur as a result of the physical pain.

Why do I feel this way?

I am trying to conceive, and I have endometriosis. 

Like most, I did not receive a proper diagnosis or care until the age of 32, but I have experienced debilitating symptoms since puberty.  I am now 36 years old, have been married for 11 years, and have been labeled with “unexplained infertility” after only about 6 months of expressing interest in becoming pregnant.

This is where I think it is important to shed more light on the pain of endometriosis and the way in which it is a barrier to trying to conceive for many women like myself. I do not necessarily believe that I am truly infertile (my ovarian reserve is excellent, I ovulate just fine, my bloodwork is great, etc), and I do not think anything is “unexplained”. In fact, I know why I have yet to become pregnant.

To me, the explanation is clear, but most find it too private and taboo to discuss. So here goes…

I am not getting pregnant because intercourse is simply too painful for me and not even a little enjoyable. I don’t mean the “ugh, we have been at this so long and trying to make this happen every other day is not fun” kind of pain. I mean anytime I have intercourse, for years and years now, I have experienced stabbing and diffuse pain with the actual act. I know there are other women out there who can relate to the inability to tolerate intercourse for any number of reasons (not just endometriosis), but I think painful intercourse is often ignored with respect to couples who are struggling to conceive.

In my younger days, I was dismissed and told to use a pillow for a different angle or to try a different lube. As I got older and advocated more for myself, I divulged to my gynecologist that I had to consume copious quantities of wine in order to engage in intercourse. It was then that I finally received an endometrial implant excision surgery, but it did not fix the pain. Over time, even the (unhealthy) wine technique ran its course and failed to produce the desired outcome. Now I am someone who has intercourse once a month (and often less than once a month) during a small one-week window of time directly after my period, but before my fertile days, when I feel a little like a normal woman before ovulation begins. I am not at all surprised that I am not yet pregnant. I know why endometriosis is preventing me from conceiving.

To be fair, I have been given physical therapy referrals for pelvic floor rehab in an attempt to make intercourse less painful, but I believe that ship has sailed. I have just accepted that enjoying intercourse will never be a part of my life. Intercourse is really just a means to an end for me, and I am interested in the fastest solution with minimal investment of effort. I did have a nurse practitioner suggest using the plastic part of a syringe (smaller than a tampon) to transfer my husband’s semen without actually having intercourse. We have tried this and will likely employ this technique again, in lieu of the “natural” method. This is another area where I know I am not alone. An online search brings up discussion boards from same-sex couples, couples where one partner has physical limitations, and other circumstances where at-home insemination is used. However, painful intercourse is, again, rarely ever openly discussed.

This is true in my social circle as well.  Naturally, I do not go around speaking to everyone and anyone about my reproductive woes, but I do have some friends with whom I am comfortable confiding. Of those, one friend in particular really represents the mindset of folks who just don’t get it–those who just can’t understand how intercourse can be so very painful and a barrier to conceiving. This friend has said it all; maybe I need a new partner, nothing can be THAT bad, or that I should just get over it and “put out”. This friend has witnessed me bleeding through my pants while out to dinner, knows I am sometimes unable to attend social gatherings due to pain, knows about my procedures and surgeries, but still doles out judgement freely when it comes to my struggles with intercourse while simultaneously bragging about how much she enjoys it.

It is precisely this stigmatization that makes overcoming this particular obstacle to conceiving such a challenge. While I have never had a medical professional tell me to just get over it and put out, I can sense when I am not being completely heard or understood…and sometimes even judged. I even had one nurse tell me, “If you can’t tolerate this speculum, you can never have a baby.”  All of this is compounded by the fact that many diagnostics and procedures are painful as well. Ultimately, painful intercourse is excruciatingly soul-baring to discuss, especially when struggling to conceive, but we cannot hope for better care and better resources if we do not speak up.  We also cannot learn from one another if we are not brave enough to share our experiences.

I am simply hoping to do my part by breaking the silence.