If you follow me on Instagram, you might have noted that I had a rough day yesterday.
I hate admitting that – because I’m not looking for a pity party.
But I do want to share some of my recent experiences trying to find a solution to my endometriosis pain, so I can get back to living a relatively normal life.
I don’t have a lot of energy for videos or blogging after the latest experience, so this will be as brief as possible, and I’ll share more with you later.
Please comment if you have any specific questions about my overall experience that I can share with you.
If you are an Endo Sister, please don’t hesitate to share your story. I’m with you – stay strong.
Clinical Trial for Endometriosis
Several weeks ago I started a clinical trial for endometriosis treatment – although I’m still in the testing and qualifying stages, waiting to move on to take the real hormone control pill (or the sugar pill – if I’m unlucky).
I did the laparoscopic surgery to burn off some of the endometriosis just over 6 months ago and still feel sore from that.
After surgery, because they couldn’t get everything that was in my Fallopian tubes, my doctor gave me a Lupron injection to try to shrink it and reduce symptoms – which completely destroyed my ability to function.
Now I’m doing a clinical trial where at least I’ll be paid to be a guinea pig, which sounds like a much better idea.
I’ve been taking a prep-hormone dose to get me ready for whatever it is they might or might not use to treat me.
I’ve also been filling out an electronic diary every day, giving a scale of my pelvic pain symptoms from 1 to 10.
Most days I’m finding are an 8 or 9.
Although I’ve had what I thought were a few 10s – the scale seems to have adjusted to a higher level of pain so I probably should have saved those 10s for what was to come.
More details of the test, specifically who’s administering, what I’m taking, and the expected side effects are confidential.
Getting a Biopsy 6 Months After Surgery
When I first went in, the extremely nice ObGyn doctor who is taking on my case gave me an extremely painful biopsy, to the point that I almost kicked him in the face and had to brace my body from trying to fly off the table – all while being held down and comforted by two nurses.
My screams could be heard throughout the office – all the nurses and aides smiled with sympathy as I left.
The doctor even gave me a hug – I think he felt bad for hurting me, but it was awkward.
I had to go straight from the biopsy to an ultrasound (bad sequence), and have to admit I was bawling full on ugly cry face by the time I finished that day.
I did get paid about $300 for that visit, so that’s something – and I am also hopeful that they are going to take a look at the genetics of my endometriosis to learn more about this thing.
Something Went Wrong
Somehow – probably my convulsing – the doctor did not get enough of a sample for the lab – or there was something wrong with the sample – I’m not sure.
This meant scheduling an appointment for a new biopsy.
This made me not a happy camper.
I went in last week prepped to do the biopsy, and even took ibuprofen that morning as suggested.
I cried in the car before going in.
But when I saw the doctor he had changed his mind.
Because I had never had a full-term pregnancy or given birth, he felt my cervix was way too tight and he didn’t want to keep causing me pain.
I was scheduled for a new biopsy with a different doctor, a female this time, who would be able to do a block – injecting me with a strong painkiller.
I have to admit I did feel so much relief at the idea of a block before getting the biopsy – I felt that was appropriate for the level of pain.
But the anticipation was still a nightmare after what I had already gone through.
When I saw the doctor yesterday for the latest attempt at a biopsy of my endometrial lining, she assured me she would inject lidocaine so that I’d barely feel anything.
I had also taken 400 mg of ibuprofen an hour before.
Despite these precautions, the pain was insane when she went in for the sample.
I involuntary convulsed and screamed, I told her to GET OUT and that the cramping was far too unbearable.
If it hadn’t stopped within 10 seconds of when she started, I think I would have fainted.
The doctor said it was very unusual for someone to experience so much pain with a biopsy. She does them every day, and never sees this reaction.
But I’ve heard stories of others with endometriosis or cancer or pelvic inflammatory disease, all having similar circumstances, especially if they haven’t given birth.
After this experience, I went home and could not stop crying and shaking for about an hour.
I took more ibuprofen, and continued to cramp and bleed all night.
My stomach swelled out by about 4 inches and was very uncomfortable, but it seems to be a bit better now.
I’m just super fatigued and now feeling drained from the experience.
I don’t know that my body can handle another biopsy at this point.
I just have to wait and see how this thing plays out now.