A healthy food & lifestyle blog specifically catering for & dealing with the symptoms & conditions of : Endometriosis, Polycystic Ovarian Syndrome (PCOS) & Intracranial Hypertension (IH).
Looking at healthy food & food alternatives- redesigning classic recipes & new recipes;
Dealing and living with chronic health conditions on a daily basis- & research about the conditions;
Alternative therapies & remedies, gardening, arts & crafts...
Before undertaking any recipes found on this blog please look to the note in 'Cookery' !

Friday, 27 July 2012

Going down the proverbial loo...

I have been a little quiet on the health front lately. To be honest it was because I really didn't feel like sharing how crap I have been feeling lately, I wanted to share yummy recipes instead.
The time has now come that there is so much about to happen that I couldn't hold off blogging otherwise the post I would end up writing would be sooo long.
So without further ado here is an update on how things are going and what the plans are...

The horrible pelvic pain conditions are well, being horrible!
Things have really taken a turn for the worse and my mounting pain was getting on top of me. As in my body was starting to shut down on me (telling me to fall asleep) and I could no longer handle the amount of pain I had been in for the last few weeks.
My pain has been primarily located in my lower pelvis, behind the pubic bone, reaching up the sides of my uterus and into my ovary area. With radiating pain into my lower back, upper inner thighs, bowels and bladder.
The pain in my lady parts and leading to my coccyx is now a constant level of uncomfortable pain with the occasional sharp stabby white hot pains. It is not nice to say the least and makes it difficult to sit down, squat, stand for too long, and at times walk! And because I travel a lot for specialists/ Dr's/ therapists on the train it means that it REALLY effing hurts!

A month or so ago my osteo suggested that I have an appt with my pelvic pain specialist, Dr. V, as she had really noticed quite a big change in my pain pattern.
So last week I met with Dr. V and we talked about what is going on pain wise and about my lack of a period (I still haven't had one since stopping Synarel at the start of the year) even though I can feel my body going through a cycle.

He thinks that my pain levels are quite concerning and he has devised a new pain med plan...YAY more medications =P
I am now on two morphine related drugs at the same time- Tramadol SR and Norspan, along with Panadol Osteo to top up when I still need something more.
I have been on both Tramadol and Norspan before, but never at the same time. This combination seems to be working on the pain- I still have pain and I still get pain spikes- but I am able to tolerate it a lot more, the drugs dull it a bit. I actually have more energy, which is not at all that surprising seeing as how much energy it takes to be in constant pain.
On the down side, last time I was on Norspan I started to develop an allergy over time, this time round it has kicked in immediately and I have a very red, rough peeling patch of skin on my arm =(  Dr. V said I could use hydrocortisol cream, applying it pre and post application of the patch. I forgot to use it prior to putting on my first patch, I have used it this week and I will find out how it has affected things next Tues when I take it off. I will say it is a lot less itchy, which I am taking as a good sign.

He has also booked me in for a Pelvic MRI next week to investigate if I have an entrapped nerve that may be causing the pain. If its turns out that I do I will be going under the knife to correct this, if it turns out that I don't we will be looking at options to help with the pain (other than pain meds).
One option we have talked about it Spinal Cord Stimulation(SCS) - 'it uses electrical signals to mask the perception of pain travelling from the painful area to the brain. In place of pain, patients feel a mild tingling sensation called paresthesia. Patients are able to control the intensity of the therapy, as well as turn it on and off using a remote control.' - Boston Scientific
Hormonal wise he thinks my body is still in a state of confusion after coming off the Synarel and also after my stenting procedure in May.
He has referred me onto a Hormonal and PCOS Specialist to help figure out what the hell is going on there, while also looking at the possibility that my PCOS is not doing so well and may be contributing to my new pain levels.
The other reason why I am seeing a hormonal specialist is that my skin has undergone a massive change in the last few months and the leading cause of this is most likely my hormones. My stenting procedure also plays a part as anaesthetics can change the skin as well.
What is happening with my skin is that I used to be normal to oily but now I don't know what I am. Earlier this month I attended a Body Shop skin care course (I am a consultant with the company) and learnt how to type peoples skin, whilst there I asked a few questions for my own skin. We figured out that my skin was now normal to oily on the bottom half of face (nose down) and then normal to dry on top half (eyes up). I am getting the occasional break out and hormonal pimples along the jaw and under the mouth. I have a bit of a shiny t zone but a forehead that is dryish, rough and occasionally flakes.
I have talked to other Body Shop consultants about what would be the best regime to use atm to help combat the hormonal breakouts, shiny t zone, and the rough flaking skin on the forehead. We have come to the conclusion that I should use the seaweed range as it is for combination skin, yet will not aggravate what is happening on my forehead as the products are water based and gentle.
I will update later to let you know how it is all going.

On the IIH and head front things are going pretty freakin good- I am even off the Diamox... how awesome it that!!!
I still have headaches and the occasional stabby pain in the head but it is nowhere near as bad as the headaches I was getting. AND I don't have all the other symptoms, well nearly- I still get the occasional floater in my vision, and the occasional tinnitus, but everything else is gone.


  1. Keep fighting, we love you!

    1. Thank you, whoever you are =)
      I put on a brave face a lot of the time, and find it hard to let people in...one if the reasons I started this blog was to create a space where I feel comfortable sharing what I am going through regardless of who reads it!
      I find it soothing to write and at times I find it easier to write about what is going on rather than verbally telling people.
      I also find that it is imperative to keep a sense of humour and be able to joke about it all sometimes otherwise it does your head in!!!
      Thank you again, and I love you too...whoever you are xoxo