I wrote a little while ago about how my Endometriosis started and how it affected me, you can read that one here if you missed it. As a short recap, I have suffered from Endometriosis since I was 16 and had two operations to treat it, one when I was 38 and one two years ago, when I was 42. I want to share the continuation of my story as I have found ways to help myself and reduce some of my symptoms which may be helpful for other people.
After my first operation, which was an official diagnosis in itself, (Endo is incredibly hard to diagnose with only a scan,) I didn’t get any real relief, the pain continued almost straight away and got progressively worse. After asking to be referred to a gynaecologist again in the summer of 2017, it was another year before I got my second operation.
That year was terrible, aside from the crippling monthly agony, I had no idea that extreme fatigue was a symptom of Endo. I had days where I could barely get myself off the sofa to put some washing in the machine. I felt like any energy was completely sapped out of me, all I could do was get through work and then I had nothing left after that. As a result, I didn’t go to the gym as much and put on some weight, I felt lethargic and not myself at all and my social life was almost non-existent. When I had an appointment with the surgeon who would operate on me, he told me to take Co Enzyme Q10 which helped a lot.
My operation was May 2018 at Guys and St Thomas and I had proper excision surgery. (The surgeon there, Mr Kunde is a specialist endo gynaecologist one which is so important). I had a lump of endo which was attached to my left ovary, it had grown so much from my scan to the op that it had moved my ovary into a different position which had been why it was so painful to try and lay on my stomach for so long. I had patches on my womb and bladder as well which were all cut out. The recovery from that op was longer, but I had an entire year with no pain!! At my three month follow up with the surgeon I told him he had already changed my life as I hadn’t had to take monthly pain killers for the first time ever since my periods began, (I was previously on Tramadol). I was on the combined contraceptive pill again by that time which is also a treatment for Endo and am still on, though every GP I see gives me a hard time about it due to my age.
About two months after the op, one of my besties Jules invited me to an event one evening being hosted by a nutritionist friend of hers Kat Andrea. Kat specialises in treating women’s hormonal conditions and had a client there who spoke about Endo. It made me quite emotional as the experience she described was so similar to my own, so I signed up for some sessions with Kat. The supplements took a while to play around with to see what worked for me, but a gluten, dairy and soya free diet was my prescription which horrified me at first! However, I have mostly stuck to it about 95% of the time in the last three years and I really think it has helped to reduce inflammation in my body. Most supermarkets have a ‘free from’ section now and restaurants are more accommodating than they used to be. Once you do the research, it’s really not as bad as I initially thought it would be.
Another thing Kat recommended was a Castor Oil compress which I try to do at least weekly, though more often is optimal, (but not when you’re on your period). You soak a muslin cloth in Castor oil, place it on your stomach where your womb is, cover it with a flannel, then lay a hot water bottle over that. You relax in bed for 45 minutes to an hour. It helps with stagnation in the body and reduces inflammation.
Coincidently, at a similar time period I had injured my knee quite badly and had seen a physio who sent me to The Running School to try and sort out the imbalances in my body. After three months of going there every week, I eventually realised that running was no longer for me. Another thing Kat had spoken about was avoiding high intensity exercise like running. Endo is an inflammatory disease and people who have it are not able to process cortisol very well, so moderate exercise is good, but exercise that produces too much stress in the body can have a counterproductive result. I started properly strength training instead with my phenomonal trainer Stella and loved it. As I got stronger, we did push hard and were doing very high-volume work outs which she is now reducing for me, as again, it can produce too much cortisol. I obviously got out of proper training during lock down but have started again and I love the feeling of power that strength training gives me. I saw a definite change in the shape of my legs with Stella and felt very in control of my body.
They are just a few of the things that have helped with my condition and I hope it’s useful for anyone else who is suffering. I am now embarking on a different stage as I am pretty sure I’m peri menopausal so I am not sure whether to come off the pill, or whether that is bad news for the pain, my surgeon said he thought I would need one more op before menopause, so we’ll see. What I do know is I need to spend time doing my own research on Endo, menopause and treatment so I have an idea before I see my GP, as so many of them know hardly anything about it… women’s health is poorly funded, researched and prioritised sadly which I do hope will eventually change.