Me and my endometriosis; the journey continues

On Wednesday I got an appointment to see my consultant, he had a cancellation so I got go see him much quicker than I had expected. I normally spend the night before a consultants appointment preparing - writing notes, questions and concerns - anything I need to mention. I found out yesterday at 2:30 that I had an appointment at 6:30, so I didn't have the time I would normally have had to prepare. I spent the remaining few hours of work frantically scribbling notes to take into the appointment with me. In the car on my way to the hospital I talked through my thoughts with Chris and as I pulled up at the door I felt ready to face my consultant.

Experience has taught me that preparing to see a consultant post treatment meant preparing for a fight. I sat nervously in the waiting area , running through a series of possible conversations, trying to find the assertive words that would convey the pain I'm suffering. I was in pain, I needed help, I wasn't imagining it, I wasn't weak, the surgery didn't work as well as we had thought it would and I needed help. I rehearsed in my head how I would position the words, the tone I would use; I needed to be calm, assertive and controlled. I sat there over thinking every word and phrase I would use when my name was called; my heart frozen, I took Chris' hand and I walked into the consultation room.

I sat down and explained my right side pain, my increasing period pain, the trouble with my bowel, the bloating and the unpredictability of it all. My consultant listened intently, agreed that what I was experiencing wasn't what he had hoped for. Next he examined and scanned me; everything looked ok from the examination (and despite the discomfort from having ones womb being poked about, it wasn't painful like I remember it being before my surgery). My consultant went as far as to compliment my "lovely, healthy Pouch of Douglas" (definitely one of the more original compliments I have received). My womb and my ovaries sat loosely and moved freely when pushed, this is a good sign suggesting that they are not fused or glued down by adhesions or endo. While this was a relief, it didn't provide any answers as to what was going on in my pelvis. Once he was done we sat to talk.

He began by apologising that the surgery had not given me the relief we had hoped for, he then went on to explain a number of things that could be contributing to my resurfacing symptoms and pain:

1. Nerves can take a long time to heal, up to 6 months. My bowel could be getting worse because the nerves are only now just healing, since they are new and fresh they are a lot more sensitive. The fact that this is happening to me so late is abnormal, but it is possible I am healing abnormally.

2. I am having phantom pain; like having a limb removed. My body still thinks the disease is there, this is causing the nerve signals to misfire and send pain signals...but he is confused as to why my right ovary/side is giving pain when there wasn't disease in the areas the new pain has started in.

3. He said that while they do their best to remove all the disease sometimes small, hidden patches get left behind and these could be causing flares of pain.

He said that due to my age and the fact that I didn't have any children (which I do want someday), we are very limited in how we could progress. The main concerns as he seen them are trying to manage my symptoms while preserving fertility. Had I have had my family he could have been a lot more aggressive in his approach, there would be a number of surgical options available, but since I have had 5 surgeries already opening me again would do more damage than good. With this in mind we decided upon taking a hormone treatment route, so he gave me two options:

1. Prostap - shutting down my ovaries entirely into a medically induced menopause. I have done this once before and for me is something I would not choose to do again, unless completely necessary.

2. Provera - which will hopefully lull Frank and my uterus into a peaceful slumber without fully switching them off like the prostap. The downside is that it can cause irregular bleeding, but if it helps my pain I'll just deal with that.

So I left with a prescription of Provera to try for three months and he will send me an appointment to be reviewed at the end of the three months. I left the appointment exhausted and with mixed feelings:

Firstly, I was pleasantly surprised that my consultant agreed that it was disappointing that the surgery didn't bring the relief we had hoped. I have never gotten this response before. I usually received "I am the best and I have done the best that can be done, there is nothing wrong with you." Thankfully this was not the response I got on Wednesday, instead he took me seriously, went through the possible causes and agreed a next step.

Secondly, I felt upset about how cruel a disease endometriosis is. I am being tortured by the very organs that make me a women, the organs I need to have children. I cannot try or even consider an aggressive treatment options because they will mean I cannot have children. So I must wait it out, a prisoner to my god damn uterus. Worse still endometriosis is one of the leading causes of infertility, so I could wait all this time, suffering all this time with no guarantee I will even be able to get pregnant or successfully remain pregnant. There is no way to test for this, no way to know, no way to predict. So I suffer in the blind hope that I will against the statistical odds be able to achieve and carry. It's just so frustrating and cruel. And despite what so many gynecologists have lead me to believe, it is not as simple as "just having a baby." The reality of the situation is that babies require their parents to have a home to put them in, money for clothes, food, nappies and baby equipment (for being tiny humans they sure require a lot of equipment). A baby is a huge commitment, not a solution to a painful life.

Finally, when I had digested what happened in the appointment I felt happy. My consultant understood the severity of my pain and symptoms; he is trying to preserve my fertility, which is important to me and we have a plan of action, something new to try for the next few months. With endometriosis there is no quick fixes, there is only a lot of trial and now I try Provera.... Me and my endo; the journey continues


1 Reply

  • Just wanted to say good luck. I had the provera injections for three years before I knew I had endo and honestly it was the best three years I've had. I hope you get the same relief I did.

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