This blog, is quite a personal one and a difficult one for me to write. But I am doing so, as I really wish to tell my story as I know that there are thousands of women suffering in silence and also many more that have not been properly diagnosed. I feel that it is important for more knowledge to be available about the disease and also for people to feel that it is ok to talk about it.
I also felt it very appropriate to write this blog now, as March is worldwide, Endometriosis Awareness Month so I am using my blog as an opportunity to try & create more information, education & discussion into an autoimmune disease that causes horrific pain and suffering to millions of women.
I was officially diagnosed with Endometriosis almost exactly 1 year ago. To be fair to my GP, when I went to him & explained my symptoms, he prescribed pain medication but recommended automatic referral to a gynaecologist. Symptoms of endometriosis vary from person to person but my symptoms included:
- Severe period pain
- Excruciating pain during bowel movement or on urination
- Lower back pain
- Extreme levels of exhaustion
- General lethargy and feeling unwell
- Swelling in the abdomen
It got to the stage where getting out of the bed due to excruciating pain & extreme tiredness became an almost insurmountable task.
The only way that endometriosis can be diagnosed & confirmed is by laparoscopic surgery.
The gynaecologist that I chose carried out a laparoscopy under general anaesthetic, burned off the endometriosis that was visible and inserted the coil. He recommended the coil in the hope that by not having a period, the endometriosis symptoms would be masked.
Unfortunately, my body rejected the coil. I began retaining fluid to the point that my shoes wouldn’t fit, my jewellery such as rings, bangles and watches wouldn’t go on my hands due to the water retention & weight gain.
After 5 months of having the coil in, I asked the gynaecologist to remove it & decided to revert to the pill – but taking the packets back to back.
I thought after having surgery, the symptoms would be gone but unfortunately, they were back but by now, the pain is worse than ever.
I am very lucky that one of my best friends suffers with endometriosis and so I have a close confidant that I can turn to when going through a nasty flair up of pain and suffering. She has been in the exact same position as I am in & is truly wonderful in guiding me & reassuring me that things will get better.
In the past few weeks, I have found one of the top laparoscopic surgeons in the country who feels that I definitely need far more extensive surgery to locate the endometriosis that is currently causing the excruciating pain. I am due to have this surgery in May so I am hopeful and optimistic that he will be able to successfully operate so that I get relief.
Although, the difficult part of endometriosis is that, when I had a consultation with him 2 weeks ago, I asked if that would be the end of it, the pain would be gone once he operated. Slowly, he looked at me with a grave demeanour & said “Sandra, has this not been explained to you? Endometriosis is a life long condition. This is your new normal. There is no cure for endometriosis. We can manage your pain & try to prevent any of the severe complications but we can’t take it away”.
The advise I would give anyone who thinks they have endometriosis or have been accurately diagnosed with endometriosis is to have the best possible medical team in place for your care.
1) You need an understanding, knowledgeable, sympathetic & kind GP. Your GP is your primary care giver and will be responsible for putting a pain management system in place so that you can live your life to the best of your ability. I believe that my GP, Dr Nick Flynn, is one of the best in the country and I’m fortunate to have him! He has a great team & they are located in Cork City.
2) Do extensive research when it comes to finding a gynaecologist. Look for testimonials. Find patients that have been treated by him/her. Ensure endometriosis is one of their areas of expertise! Honestly, I could not stress this to you enough. Doing your homework before you see a consultant is of the upmost importance. You need to be 100% confident that you are putting your body into the hands of someone who has the expertise in the area of surgery required.
As I said at the beginning of this blog, this one is very personal to me. I am not writing it to get sympathy or pity but to quite simply create more awareness. If I have helped one person by writing this, it will have been a successful blog.