Options for the Optionless

Yesterday I went to visit the lovely people at the endo clinic in Addenbrookes. It has been 7 months since my laparoscopy and Mirena insertion, and, as you all know, although I have had a certain amount of relief initially, the pain is very much still prevalent.

The thing about endo is that although 1 in 10 women have it there is pretty much bugger all they can do. It’s about management, rather than cure.

I am 16 years in with this disease. I have done, hopefully, half my menstrual “life sentence” so in another 16 years or so while my peeps are bemoaning their menopause I will be rejoicing.

So, 16 years in and here is where I am:

1. I have had 5 laparoscopies. These have provided a certain amount of relief for a short time each one. The risk with further laps, ie to have one each year as management, is that the more ops you have the more scar tissue can form, gluing my organs together and causing pain. So, we are kind of done with laps.

2. I have tried every kind of combined and mini pill there is. Hormones don’t sit well with me, and the cramps in my legs indicate that the history of thrombosis on the family should not be ignored. So, we are done with the Pill.

3. The Mirena Coil is now in and has been for 7 months. It hasn’t “settled” for me. In fact they can’t find the damn thing and I need to go and have a scan to locate it. Although my periods are lighter and less frequent the mood swings are hideous ( ask Miles), I feel bloated and I still get endo pain. For me, this hasn’t done the trick. So, are we done with the coil? Maybe, but apparently it can stay in situ while I go on the daddy of hormone therapy, Zoladex.

Ahhhh, Zolly.

I have always refused Zoladex in the last 16 years. Why? Because it is a very strong drug which can only be taken for 6 months at a time. It can only be taken for 6 months because the side effects are so horrific and bone mass destroying that even with the add back HRT drugs they give you to counteract it, the time span you can take the thing is limited.

In my pre-motherhood days when I was concerned with preserving fertility the notion of paralyzing my ovaries to cease working and cause a temporary menopausal state was not something I wanted to do. There is a risk that you don’t come out of the menopause, and I felt against the chaos that night sweats and hot flushes would bring from being injected with an “anti-female” drug.

I am not anti female. I love being a woman, I would just like to be one not in pain.

So, the consultant offers Zoladex at this juncture. Quite rightly, she points out that further laps are just more diagnoses and are causing more risk and damage. Mirena isn’t working. Hysterectomy at my age isn’t recommended since taking the uterus out doesn’t stop endo from being active, and a full ovaries’n’all jobby is like train crash menopause. A surgical shock, with HRT given that has oestrogen  in, this feeding any alien specks of endo left clinging on to my battered pelvic cavity.

I can have Zoladex for 6 months, once only and that’s it. The next stage after that is to re-assess my body and take a view. On what, I am not quite sure, but there you have it. So, basically I can have treatment that will make me be pain free (hopefully) but potentially deepen my depression and have all manner of side effects for 6 months. What to do?

I am going to talk to as many of my endo sisters as I can and see what their experiences have been with Zoladex.

The overall truth tho, is that this thing won’t go away. I could have 6 months of pain and then have it back, so do I gamble my mental and physical state for 6 months knowing that it will return anyway? Or, do I play safe, and stay as I am, hope the coil settles some more? As things stand I am in pain on a daily basis, and chronic pain on a weekly basis. I know what I am dealing with and what to expect, my depression around the relentlessness of it is manageable as I am no longer fighting it but accepting the way that I need to live my life, and I am able to exercise, work, live and do as much as I want to a certain, very limited, extent.

I also want to look more into the “radical” treatment offered oop North. My own consultants weren’t open to this procedure, so I could bide my time, stay Zolly free for a bit, talk to this £10,000 man and see where we are.

Decisions, decisions.

DD

xx

 

Image: The Retronaut's photostream