I’m sorry for such a long silence. On Thursday last week, I had my small operation. It has taken me a few days to get back to the point of being able to write again. Anaesthetic and I are not the best of friends so the first couple of days after the op were not very nice. Now it’s good to be back! I’ve missed you all and I’m looking forward to getting caught up, both here and with your lovely blogs. I still have pain but it’s manageable.
The operation did not go in the way expected and it isn’t medically bad, but it is confusing.
The plan of the operation was to do a laparoscopy and laparotomy – look inside the womb, look outside the womb and at the surrounding organs, remove the endometriosis and insert the coil, all under general anaesthetic. (I don’t want to bore people going into too much detail as I’ve posted on this several times before, however you can read more about it here , here and here.)
I had been told for around the last 2 years that I have endometriosis and that this is what has caused the last 10 + years of heavy, really long and painful periods, bladder problems, constant pelvic pain, back pain, amongst other things. So I was expecting a big benefit of the operation to be removing the endometriosis and that therefore my symptoms would reduce or go away afterwards.
When I saw the consultant right after the operation, he said that they found no endometriosis at all. I don’t have it. It was the wrong diagnosis. They cleaned out my womb (eeek!) but found nothing wrong with my womb or the fallopian tubes. There were no cysts and no growth of cells outside the womb or onto other organs like the bladder, which they had previously been sure there would be. They did insert the coil.
I was stunned. Of course, it is really good that I don’t have endometriosis. From the reading up I have done over the last couple of years (for example, here), I know what a terrible condition it is. On the other hand, this outcome has left me really confused. It has left me without any specific explanation for my symptoms. It means I do not know whether or not I am going to get the improvement in my symptoms, especially the debilitating pain, which I had so much hoped for after the operation.
Also, I felt really stupid, fake and that I must be imagining it all. I shouldn’t have had the operation – yet again I’m a fake – my mind was screaming at me. The doctors were kind and they said it wasn’t my fault and wasn’t wrong that they did the operaiton. It was their decision to do it and my symptoms had worsened to the point that they needed to do it, if only for the exploratory purposes of finding out exactly what is going on. Endometriosis growth typically does not show up on any kind of scans – the only way to find out 100% for sure if / where it is present is to operate.
It’s a good thing they have checked out the situation. If it was essential to look inside, I almost kind of wish they’d have done it years ago rather than giving me all different kinds of medications potentially to treat the wrong thing. However, I do understand some women find that whatever the exact problem is, medications like the Pill and tranexamic acid can manage the symptoms and that’s how it’s treated, even if you can’t remove the root cause (kind of weird to try to get my head round).
Everything feels very confusing. My head is getting noisy at times with all the thoughts of being fake, having imagined it, having deceived people, specifically having deceived people into helping me and treating me. Fraud, fraud, fake, you made it all up, liar…. the voices say. When you have that struggle in your head already, having a load of “unexplained” physical symptoms that are horrible in themselves but are hidden and not able to be proved (you can’t see them on a scan, for example) is horrible and really triggering.
The doctor said that there could be a problem with my ovaries. I’m not sure exactly what problem he is thinking of. I was still reeling from the “no endometriosis” news and was still confused and foggy from the anaesthetic. I will have to check that out with my GP. The doctor also said that some women do have really heavy painful periods simply because of hormonal problems.
The coil I’ve had fitted should help with that. It’s definitely a plus that they have been able to insert the coil. All being well, I can have it for 5 years before it needs to be changed. It is good that it was done under the anaesthetic because for various reasons, some to do with the effects of the sexual abuse when I was a child, it is too difficult for the doctor and painful for me to fit it without anaesthetic. The doctor explained that the coil can take 3 – 6 months to settle in. (Seriously? 3 months? What’s it up to for goodness sake – is it popping out to buy a new 3 piece suite at Ikea? 😉 Still…) Then, it’s hoped that I will have no monthly periods, or that they will be much lighter.
This means the next step is to wait to see what happens in the coming months with the coil, and to find out what may be the issue with my ovaries. In addition, I will potentially need some more investigations. They may need to look further into what is causing my bladder issues, since it wasn’t endometriosis growths. This could be part of my fibromyalgia, or the neuropathic symptoms.
I’m also at the start of being investigated for a potential connective tissue disorder. I’ll leave that one for another post as it’s rather a long story, but I have just found out that it can contribute to a lot of gynaecological problems, as well as joint problems and pain.
Thank you so much everyone for your support in all your lovely kind comments leading up to the op. I do feel guilty now after you gave me all that support and it then turns out to be not at all the diagnosis that it was thought to be! I’m sorry. I feel really bad for posting before having been so sure it was something it wasn’t. It was what the doctors had told me it was, but I still feel bad. Your encouragement and friendship still really means a lot whatever the ultimate diagnosis and treatment is. I’m thankful.
[Image sourced from memecenter.com – with thanks]