I spent years downplaying and hiding my struggles. Even after getting a diagnosis I spent months wondering if I should stay silent or not. I decided to share my story in hopes of raising awareness about Endometriosis and to give people a small insight into the common experiences of girls dealing with this issue. I also spoke out to free myself. It hasn’t been an easy road but I have learned a lot along the way. Working through days of pain has proven that I can succeed if I put my mind to it. Refusing to give up on my quest for wellness has made me appreciate my streak of determination that I get from my Mum. Being knocked back and picking myself up and continuing with a smile has shown me that my positive spirit will prevail. I don’t want Endometriosis to define me or control my life so I have to make the conscious decision not to let it.
After many disappointing and confusing appointments with doctors I decided to take it into my own hands and educate myself. It has taken a long time to gain enough knowledge to feel comfortable in deciding the path of care that is right for me. That has involved saying no to doctors and even calling them out on a few things. I have gone back and forth a lot of times wondering if I’m doing the right thing or should I listen to whatever I am being advised. I have learned the hard way that unfortunately there is just so little knowledge about Endometriosis and its treatments options. No doctor is to blame for this, as they are just doing their best, but I do believe that there isn’t enough importance given to proper training about Endometriosis and women’s health. If you don’t feel 100% comfortable with your treatment, getting a second or third opinion is worth it. I have documented my journey to diagnosis and my experience of my first laparoscopy surgery because I believe being realistic in a world often based on perfectionism is much needed.
After my surgery last year I felt like I got my life back, which was the most amazing feeling. When you’re dealing with problems that are chronic in nature, you get used to your new normal. It was only when I didn’t have those problems hindering my day to day anymore, that I really realised how my life had been affected. I am so thankful for the things I have regained, like being able to go out and dance with my friends and not have to be the first one to leave every party. To be able to flourish in my career and travel with my partner without having to take pain killers. I have had a drastic improvement in my back pain and my bladder pain since surgery which has improved my quality of life ten fold. I wasn’t able to keep up with my friends before and often turned down plans because I was embarrassed I would ruin other people’s time by not being on top form. The truth is you’re not always great fun when you’re in pain, as it really drains your energy. Endometriosis comes with systemic issues like fatigue and a lowered immune system too. I am usually a chatter box but when pain takes over I usually go quiet and withdraw. Those instances are much fewer and farther between now thankfully but I have noticed some symptoms creeping back over the past months.
One thing I hadn’t considered having to deal with was the fear of going back to how I was pre surgery… As many good days go by, it’s the bad days that put the fear in your mind ‘has it grown back already?’ ‘is there damage being done?’ but I have for the most part ignored a lot of things because I still have those good days to focus on. I sometimes feel like I’m not being thankful for the improvements I have if I complain. In recent months I have gone back to the doctors over pain that has returned in my side and been told they need to do another surgery to see what’s going on. Only a year and a bit on from my last surgery I wasn’t expecting to be making this decision again. I’m not going to lie, I was upset.
Equipped with the knowledge I have gained over the last year of research, I knew I wanted a second opinion. I travelled to Birmingham a few weeks ago to have a consultation with a specialist excision surgeon and I am so glad I did and could put my self doubt to rest. He put it to me as a simple question, ‘are things worse now than four months ago?’ I replied yes. And so he explained that it is likely then it will be worse again in four months time from now. I think he could see that I was quite anxious so he explained that it’s not just about symptoms but if there is endometriosis progressing, that can cause more damage left untreated. That is what solidified my decision to go ahead, because regardless of what I can ‘handle’ or ‘put up with’, I don’t want more issues to be caused if I could avoid it.
Having read up a lot on endometriosis treatment I knew that excision surgery by a highly skilled surgeon is my best chance at longer term improvement. This is where they cut out tissue from the root to remove it, rather than just burning off the top layers, which is what was done in my previous surgery. I don’t have any certainties of the outcome of this upcoming surgery or any guarantee of how long any improvements could last, but I trust my Doctor this time, and that is a great feeling. I believe whatever he finds he will treat with expertise, and I know it is a risk I have to take in this quest for wellness. I don’t want to settle anymore for good, I want to strive for great, so here’s hoping.
Until next time…
I am scheduled for excision surgery on December 13th, and will continue to document my journey. I appreciate each and every person wishing me well and I am glad of any positive thoughts sent my way. I promise I won’t give up on myself.
Since my first surgery in March and than finding out in May I had endometriosis, the pain has gotten worse. Saying no to doctors was so scary, especially the first time they get very annoyed that I would even think about disagreeing with them. I’ve now done some research and plan to go to the uk to get a proper scan done. I hope your recovery went well xx
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It is really difficult to challenge the information you are given by a health professinal, especially when you are in pain and really want help asap. Alot of girls with Endo have to take their health into their own hands as you have by educating themselves and seeking second opinions. Best of luck with your future care, thanks for your comment x