Everlasting Long and Painful Journey

[nicolaal26]

I have been on an endless painful journey for sooooo long. Prior to 2017 I would suffer with heavy bleeding and painful periods that would last weeks. This was treated with a Mirena which was a blessing until we decided to extend our family further. We unfortunately lost our 6th unborn child, which devastated us that much we decided to not try again.

I had the Mirena reapplied and following 2 attempts it would be displaced, on exploration they discovered fibroids. Treatment was started and I insisted on a hysterectomy which the Gynae team refused and met me half way with having my tubes removed. Following further treatment with a medication an alert was issued on the medication that all patients had to undergo scans of their liver, on receiving this it was discovered I had liver disease.

In 2019 I was in constant severe pain which resulted in me being bed bound most the month especially around my period. No treatment was working and I had an significant impact in mobility, which has led to me having to use a walking stick now. I was unable to go to work or even care for my children.

After endless attempts and disappointments, the hospital agreed the hysterectomy, the day before surgery they cancelled it due to my Diabetes. I put in a big complaint over their lack of preparation in ensuring a care plan was created and they failed to discuss with the Diabetes team if they were happy for surgery to go ahead and what the care plan should entail (who were in support of the surgery). I lost all faith with the medical team and asked my GP to refer me to another hospital and to the one I chose. I said I was prepared to start afresh as this team was a better one than the one I was under. Whilst waiting for my first appointment my GP diagnosed me as having Endometriosis as they were confident this was the problem. Following this the Pain clinic finally after 2 years agreed to see me and I have been under them since.

On my first appointment to the new hospital in 2020 I was advised had I approached them first they would have granted my request of a hysterectomy and not put me through all I went through. This left me angry and upset that I had spent years with a hospital that does not follow the same process. Surgery was planned with a careful planned care plan. The surgery entailed 2 outcomes the hysterectomy and exploring for Endometriosis. Due to complications in surgery they were unable to achieve the second part, had they done this they could have removed my ovaries when seeing them having cysts and Endometriosis on them.

Shortly after surgery I was suffering sever back pain and had a MRI which they diagnosed me with a herniated lower disc which they feel was caused from the emergency in surgery.

It has took 4 years of loads of scans for them to now diagnose me with Endometriosis on my ovaries and Poly Cystic Ovaries, with the view that Endometriosis is elsewhere too which explains how severe my pain levels are. Surgery is unfortunately at present not an option due to how high risk I am and I was unable to tolerate HRT treatment as it made my Diabetes worse. The plan now is long term pain management. Regular pain medication now includes: Paracetamol, Codeine, Amitriptyline, and Pregabalin. When my pain levels increase I take Morphine, Ibuprofen pain patches, TENs therapy and Heat therapy . With pain patches being introduced at present to aid in coming off Codeine and Morphine.

Despite all this medication my pain levels continue to be on a good day 5/10 and on a bad day 10/10 where I need to take the morphine. I have to carry a pack with pain medication and therapy when I leave the home alongside one for my Diabetes. In an attempt to aid with weight loss and due to being restricted on exercise I was put on Ozempic/Trulicity which initially worked, but it is constantly battling my Gynae problems and I always end up with my weight just stalling rather then increasing or decreasing.

This journey has been one long, depressing, disappointing, and painful, where my quality of life, mobility, and gaining further health problems has impacted on me greatly. On receiving the diagnosis I thought I would be overjoyed but it left me with such sadness that there is no process that makes this quicker, less evasive, and humane, especially for many other women that undergo this.

Whilst my story may seem depressing, I see it as a opportunity to aid others to know that you are not alone. Whilst my mobility is still impacted upon and I can only stand and walk for up to 10 minutes, I am grateful I am able to not be bed bound anymore, I continue to work with physio which is a long term process and have started slowly going swimming. The pain clinic continue to review me and I am on the waiting list for acupuncture. I have found work where I can pick my own hours, days and capacity, to gain my independence and help my emotional wellbeing.

With technology advancing it is odd that this process does not receive the necessary funding to make this process easier for women. There are consultants trained in this speciality and yet they too take too long to make a decision. Each hospital has a different approach rather then follow one approach so there is continuity and women are not having to research into a hospital in the hope they have a better outcome. By continuing to share our stories hopefully these areas become past hurdles, with many avenues of focused treatment plans.