My Story so far (Part 2)…

health, life, Life Story

(Please read part 1 first!!)

After dancing around each other for a few weeks (but definitely falling in love) I decided to stop trying to protect myself from hurt and let myself be loved. He was amazing- completely understanding of my need to rest and limitations. I felt so adored. Unfortunately on our ‘big night’ I was agonized with pain down below both externally and internally. I had never experienced anything like this before and it was heartbreaking that I had finally found’ the one’ and we couldn’t be intimate. Thus began our long journey to diagnosis.

The gynecologist we saw was uninterested in the external problem and focused on the internal. I had always had awful pain with my periods as well as other stomach pains. These things along with the pain on intercourse suggested endometriosis and I had a laparoscopy, which confirmed this diagnosis. There is a link between autoimmune disease and endometriosis so I wasn’t too surprised. They removed what they found and set me on a 6 month course of Zoladex injections. But this really didn’t work for me. I gained over a stone in weight which of course got me down, but the painful Zoladex injections (injecting a rice sized thing into your tummy) did not have the desired effect. They are meant to put you into a synthetic menopause, but my body didn’t listen. I had all the side effects of menopause but I bled continuously and heavily through all 6 months.

Meanwhile, I did a lot of research and found a specialist in London who deals with dermatological problems of the vulva. I had already through my own research come to the conclusion that I must have vulvodynia, and after months of Drs and consultants not knowing what was wrong or believing anything was wrong, I finally saw this specialist who diagnosed vulvodynia (vestibulodynia more specifically) and vulval dermatitis. Washing only with the prescribed emulsifying ointment I cleared up the dermatitis as well as eczema on the rest of my body. For the vulvodynia I have since tried all possible treatments. I have spoken about this in a previous post called ‘The Kind of ill you cant talk about’ so please read that for more details as it is a really important issue. Women wait years and years for a diagnosis of this problem and finding my specialist was a breakthrough for me. No treatments have been successful for me unfortunately and it completely tears me up both physically and emotionally, leaving us still unable to have sex and me in a constant state of worry of the pain. Of course hubby is incredible despite all of this.

Back to the endometriosis! After the unsuccessful Zoladex I had another laparoscopy which found a huge amount of endo deposits around my uterus, bowel, vagina and Douglas pouch. I must mention that my gynecologist was a complete ass! He would shush me during consultations and speak only to my husband! He had no regard for women whatsoever and yet that was his area of specialty! It baffles me! Anyways, after the 2nd surgery even he admitted that the 1st one wasn’t done well enough and that I should see more benefits this time, which I did. I was put on depo provera which was horrid and had to stop but after the operation my pain definitely decreased and although we still couldn’t have sex, I could feel inside that the pain was lessened.

Not long after the 1st surgery my now husband proposed and after the 2nd surgery when my pain was improved, we began planning the wedding. We bought our own house too and got our gorgeous Pug! My music was going well and had new band members and singing students as an extra job. Unfortunately at the beginning of 2014 I began collapsing again, with the right side of my body going weak and losing consciousness. It was happening everyday some weeks. I went through a lot of tests with the neurologist again. I forgot to mention earlier that they found in a previous mri that I had a small lesion on my brain, but thankfully this hadn’t grown! Again it was put down to migraine but also low blood pressure. Tremor is something I also have suffered with for years and this was worsening and affecting my guitar playing. This was found to just be essential tremor with no deeper cause. After months of not doing much and resting I started to feel better and just in time for the best day of my life- our beautiful laid back rustic picnic barn wedding. I couldn’t have asked for a better day. I felt good and everyone was happy.

Along the way, I have suffered with acid reflux disease, painful hypermobility syndrome and went completely gluten free to aid with my autoimmune thyroid disease. It’s been hard but I am doing my best to keep myself as healthy as I can be.

I am now waiting to go and visit the specialist endometriosis clinic at London’s St Thomas’s Hospital as the pain has returned to its worst, but otherwise things aren’t bad. Well they’re pretty good really aren’t they! I may have long term health problems that affect what I’m capable of daily, and pain that may never go away but I am loved and in love. I definitely have down days and times when I cant motivate myself but this is me and I will always strive to do my best.

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