A true insight to my journey of a Endometriosis Diagnosis, A full Bilateral Hysterectomy and Surgical Menopause.
Take it at your own pace, life is not a race!
Now approaching two years since receiving a diagnosis that I battled long and hard for.
Ignored and Gaslit by my GP
Going back to June 2022, I had visited my GP around 8 times. Numerous visits back and forth to my GP with lots of symptoms. Back pain; severe period cycles; unusual periods ( for me, bleeding every 10 days ); Diarrhea; Fatigue that never subsided; painful sexual intercourse; fluid leaking – some symptoms to name a few.
Each time I visited my GP, I was never listened to. I was told; it’s normal to have heavy periods, “go on the pill”, “you are displaying signs of anxiety”, “you do not meet the threshold for a GP referral
Finding a Private Consultant
After my 8th visit to my GP, to say I was feeling deflated, it was an understament. I didn’t feel validated or heard and I felt desperate. I sat with my husband and we decided to use some of our savings in order to access a Gynecologist privately. After much research, I was booked into see my Gynecologist early August 2022.
Upon arriving at my appointment, I was nervous. I was nervous encase I wasn’t listened too, I was nervous encase it was “all in my head” and I was fine after all. So much anticipation was built up in my stomach. I went into the appointment with a list of questions and my consultant was just amazing. She listened and heard every word I said to her. She sent me straight down the corridor for blood tests and she even managed to get me in that afternoon for a ultrasound.
A day or two later, she called me and advised that the ultrasound had revealed that further investigation was required. A laparoscopy was needed for her to see more into my ovaries and uterus.
On the 1st September 2022, I went in for my laparoscopy. A Laparoscopy is a type of keyhole surgery used to diagnose and treat conditions. It allows a surgeon to use only small cuts and a camera for procedures inside the tummy or pelvis. I was told I would be in and out within 1 hour. Nearly 4 hours later, I remember waking up, but feeling very sick.
My consultant told me I was under a significant amount of time more due to her finding Endometriosis. Endometriosis is a long-term condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.
Stage IV Endometriosis Diagnosis
She proceeded to tell me that not only did I have Endometriosis, I had stage IV Endometriosis. Sadly, it had spread from my womb, ovaries, bowel and bladder too. She had spent alot of time lasering the Endometriosis away and trying to stop it spreading. Unfortunately, I was in abit of a mess. Due to the spread, it would only get worse / keep spreading if my ovaries were not stopped. Therefore, I was told I had a couple of decisions to make. She wanted to either; place me into “Chemical Menopause”- Chemical menopause is a term used to describe a temporary (and reversible) menopausal state created with the use medications called Gonadotropin Releasing Hormone Analogues (GnRHa) – a type of drug which acts on the pituitary gland in the brain to suppress ovulation and production of ovarian hormones.
Or I was to have a total Bilateral Hysterectomy – A bilateral salpingo-oophorectomy is surgery to remove both of your ovaries and fallopian tubes. The hysterectomy and bilateral salpingo-oophorectomy will both be done during one procedure.
I’ll be honest, I couldn’t get my head around what was being said or being asked but I felt time was of the essence and a decision needed to be made pretty quickly. I reverted back to a conversation with my husband and we talked through my options.
Out of sanity, I chose to be placed into Chemical Menopause. I was then given an injection into my bottom, it was called “prostap”. You can have the injections on a monthly or 3 monthly cycle. Mine was to be on a month cycle. Prior to leaving the hospital I was given an injection and I went into the nurse each month October, November and December, which turned off my ovaries. I was also put on tablet HRT in order to manage any menopause symptoms I had.
Chemical Menopause
My experience was hard, I didn’t like the process and I didn’t feel great. I felt really snappy, my body all of a sudden didn’t feel as it did anymore. The prostap injections weren’t particularly pleasant. They were injected into my bum cheek each month. I was invited into hospital early December 2022 to have another ultrasound. I was told after that visit, I needed to have a total Bilateral Hysterectomy due to the spread of my Endometriosis. Whilst the Chemical Menopause was trying to do its job, sadly it wasn’t working for me.
Honestly, the thought of the Hysterectomy was just a vision. I didn’t know anyone who had been through it, I had no one to speak to about “their experiences”. I went with the flow so to speak.
Hysterectomy
29th December 2022, I went in for my total Bilateral salpingo-oophorectomy Hysterectomy. The only way I can explain the process, it was like a “light switch”. One moment, I felt me, bubbly, outgoing and confident. The next, I woke up feeling empty, confused, emotional and very hormonal and sent away with a “HRT slapped on my bum cheek”.
I was in surgery for roughly 3 hours. I had a keyhole Hysterectomy. I remember feeling so poorly, I had a catheter in and being told to get up and walk around 13 hours after surgery. The pain was tough but I understand they wanted me to just move and get my body working. I had a visit from my consultant to say, all was a success and I would be sent away with a Everol 100 patch ( HRT ) and a letter would be written and sent to my GP in order to review me and my menopause symptoms.
My recovery was tough – roughly 6 weeks to feel back to a form of normality but even when my body bounced back to what I thought was normal, my mind was effected by the whole process, as was my symptoms of menopause.
Weeks later, I went on a “train of research”, I didn’t know that my menopause was different to other ladies, I was in Surgical Menopause, not natural. Meaning, I had skipped the Peri Menopause stage and went straight into menopause with the “click of the light switch”
A few months into my Surgical Menopause Journey, my HRT care had been reverted back to my GP to manage on the provision that I was on a minimum of 100 mg HRT patches and I needed Testosterone Gel too.
However, I just didn’t feel right.
Hormonally I felt a massive decline and I didn’t know what to do. I went to my GP and asked them to run bloods to see what my hormone level was at ( yes, I had to ask – this was not automatically done ). They agreed to bloods. However, on getting my results back, I was told even though my Estrogen level was at 120, they could not “up” my HRT as they were not licensed to support me with it.
Further research I found Menopause Care LTD, Founder Naomi Potter. They are a private service but I wanted another opinion as again, no support from my GP. I spent £295 on a private appointment, they reviewed my recent blood results from my GP and I was told my bloods “Estrogen levels” should be 800. This Menopause GP, put my HRT up to 200 mg of Patches and increased my testosterone. She also spoke to me about Vagirux – Vagirux is used to relieve menopausal symptoms in the vagina such as dryness or irritation. In medical terms this is known as ‘vaginal atrophy’. It is caused by a drop in the levels of oestrogen in your body. This is a local Estrogen inserted into the Vagina and is seperate from the “patch dose” of HRT.
She was very informative but it was a price tag and I had to pay additionally £45 for the HRT.
I knew that whilst it wasn’t a long term option for me to keep paying to see her, I knew that she was serving my body and providing me with what my body needed, which was a start. She did write to my GP and asked for them to review my case and their licencing given, the fact I was in Surgical Menopause and I didn’t fit into the “natural menopause box”.
Sadly, 2 months into this new regime of HRT, my GP wrote to me and advised they would not support my HRT requirements and recommendations of the private Menopause Dr due to their licencing. They advised they needed to cut my HRT back down to 100 mg patches.
Where to turn
I’ll be honest, I crumbled- I hit a all time low, I didn’t know where to turn or what to do. I was mentally in a very bad way and I spiralled. I had been following a wonderful lady on Instagram called Victoria Hardy – Ginge Unhinged – @ginge_unhinged, I knew she had been through Surgical Menopause and she was the only person I knew of someone to turn to. I reached out, sent her a voice note of desperation and she was amazing. She gave me so much direction of where to go next and what channel to take. Whilst she isn’t a medical professional, she was my saviour at that point and I’ll be forever grateful to her. She told me how I needed to Advocate for myself and use my voice. She was honest that the battle and journey wasn’t easy but assured me that I would get there.
Always advocate for yourself
I took on all the advice and support from Victoria and I mustard the strength to fight for myself. I took my case to the Practice Manager of my GP, I asked that they looked at me as a person and not a number in a box. I laid all the evidence out infront of them for them to review. I explained my desperation, vulnerability and request for help. I also pointed out their lack of help prior to my “private Endometriosis Diagnosis” and the fact that had they helped me in the first place, I wouldn’t be where I am now.
I won my case and they agreed to support my HRT ( as directed from Menopause Care LTD ) and they put in a referral to a NHS menopause specialist at my local hospital.
I have now been seen by a Menopause Specialist at my local hospital who have been wonderful.
My journey is far from over and I still battle with my symptoms mentally/ physically daily. However, my power now is knowledge. Knowledge is power and I know where to go if and when I need the support. I feel I’m now a walking dictionary on Surgical Menopause but I have researched the hell out of it. Finding the strength to advocate for yourself is key. Then finding the strength to advocate for others is another step.
I have recently started a community support group with a dear friend who is currently in Peri Menopause. Our aim is to support as many women possible, providing a safe platform for ladies to share their experiences and knowledge.
We have some backing from our local council who will be supporting us to support our community. We are really proud of what we are providing for people.
Always, listen to your instinct. Always dig deep to find some strength. Always advocate for yourself. When you can master these three things, you’ll win every time.
Love
Amy xxx
Founder of Surgical_menopause_journey
Co Founder of memyselfmenopausegroup