Support Vanisha's Journey: Endometriosis Surgery Fundraiser

Hi, for those who don't know me I'm Vanisha, and I'm fundraising for my complicated case of endometriosis. In 2021 my health began to deteriorate. I was experiencing extreme fatigue, severe pelvic pain, very heavy, painful periods and mid-cycle bleeding. I became completely bed-ridden, with my Mum and sister having to do everything for me. The pain was so excruciating that we had to call an ambulance a few times, and we had also been to A&E many times. Unfortunately they weren't able to do anything, except prescribe me very strong medication to relieve pain, which never worked.

After a private ultrasound scan and gynaecologist appointment, they were certain that I had endometriosis - which can only be diagnosed and treated through a £3000 laparoscopic surgery. The NHS has a waiting time of 2 years for this surgery and so, my extremely supportive parents and sister offered to pay for my private surgery. I could not continue my life in so much pain; unable to shower, unable to feed myself and with no painkillers working (including morphine). I was often screaming and sobbing in pain on the floor, as there was no position I could sit in that wouldn't trigger my pain.

After the surgery, the gynaecologist immediately told me that there was no endometrial tissue to be found and he had no idea what was causing my pain. I felt so helpless because even though I was grateful that I didn't have a debilitating, chronic condition, there were no answers for my pain and no pain relief. I was even admitted to the Leicester Royal Infirmary for 1 week after the surgery, but due to Covid-19 and a lack of NHS staff and resources, they put me into a neurological ward and no specialist came to see me. I was discharged with "severe IBS" and "anxiety". I decided to take my health into my own hands and seemed to somehow manage some of my symptoms by following a vegan, gluten-free diet, taking probiotics, breathing exercises, yoga, meditation, and having therapy. But I was often in a lot of pain: I could never wear bras or certain clothing, I couldn't stand on hard flooring, I would always be bloated and suffer from acid reflux, my sugar levels dropped all the time (despite not being diabetic), and I had excruciating, heavy periods with mid-cycle bleeding. I was so worried about not being well enough for my only sister's wedding.

Fast forward to July 2023, my health began to decline again. I had 3 back-to-back throat infections, stomach problems, terrible acne, and I was gaining weight like I never had before. Even when we went on a family holiday that summer, I couldn't enjoy myself at all. I was locked indoors in an AirBnB, as my body was constantly exhausted, it couldn't regulate temperature and my stomach flared up from taking so many antibiotics. By the end of November 2023, I was bed-ridden again and I had to take a sick leave from work as I was sleeping for days, unable to function. My periods were heavier than ever. I was getting blood clots the size of my palm, and it terrified me. I felt like my body was shutting down.

Since December 2023, I am still bed-bound. I had to leave my job and I'm unable to leave the house due to feeling so unwell. I'm completely debilitated with chronic fatigue, chronic body pain, stomach issues, pelvic pain, hair loss, painful ovulation and period pains that have me rolling on the floor. I have seen countless doctors who diagnosed me with chronic depression and anxiety with insomnia, and a rheumatologist who diagnosed me with fibromyalgia (a chronic condition that causes extreme pain). Yet nothing was making sense.

In the last few weeks I have deteriorated further. New symptoms have appeared: shortness of breath, rib pains, constipation, dizziness, red rashes and hives, loss of appetite, abdomen pain and pressure every time I eat and feeling like I will fall to the ground every time I try to stand up. I started to limp, as even my feet touching the ground pulls on my abdomen. I had to have a private pelvic MRI scan, as I had a feeling that this was related to my uterus (even though my 2021 surgery was clear). The MRI scan showed: PCOS (polycystic ovarian syndrome) and a small hernia. A lot of my life began to make sense, but these conditions still didn't explain the debilitating symptoms and are not supposed to make a person bed-bound.

Once again, various GPs and A&E staff could not figure out what was going on. However, I was admitted to the hospital and on my second A&E visit, I was finally seen by a gynaecologist. The doctor said to me, "You have endometriosis". I said: "It's impossible. My 2021 surgery showed that there was nothing there". He replied: "Did you know, 50% of women with endometriosis have clear laparoscopic surgeries, even though it's the gold-standard procedure for diagnosis? Most endometrial tissue is hidden and it can be absolutely anywhere in the body". The wave of relief I felt was beyond anything. I finally had an explanation for my health and I wasn't making my pain up (like countless people had told me). But this meant, the journey has only just started.

Endometriosis is a disease where tissue similar to the uterus lining grows outside the uterus. Usually it is found in the lower abdomen, the ovaries, intestines/bowel and bladder. But it can also be found on the stomach, kidney, liver, pancreas, diaphragm, heart, lungs and the brain. This means, every time a woman with endometriosis has a period, she bleeds not only from her uterus, but also from anywhere else that the endometrial tissue is present. 1 in 10 women have endometriosis. However, on average, it takes 8 years before a woman is diagnosed. My periods had been heavy and extremely painful since I started bleeding at 12-years-old and in 2019, it became seriously heavy with big clots. But I was always, always told that this was normal, due to the lack of awareness, funding and research for women's health.

As my endometriosis is hidden (known as deep infiltrated endometriosis), we first need to locate the tissue to see if it can be treated and burnt off. The longer endometriosis is left untreated, the more damage it creates, as it leaves behind scar tissue. The tissue is ever-growing and spreads (similar to how cancer spreads). It even sticks and fuses organs together from the monthly bleeding, as the blood has nowhere else to go. This is why endometriosis is known as one of the most painful conditions ever. To ensure the tissue doesn't grow back, hormonal treatment is required after surgery and if this doesn't work, a hysterectomy may help.

My parents and sister have spent thousands of pounds on my health in the last 10 years, and now, I really need your help. Raising £10,000 will help me towards:

1) A Pre-Consultation Ultrasound, with a specialist team on Harley Street, London. This is one of the only centres in the world that is able to find deep infiltrating endometriosis (DIE) and unusual missed causes of pelvic pain - £390

2) First Consultation with a Renowned Endometriosis Specialist (one of the best in the world) - Mr Peter Barton-Smith at The Princess Grace Hospital in London, who specialises in DIE - £395

3) A Robotic Laparoscopic Surgery conducted by Mr Peter Barton-Smith. This is important as a normal laparoscopy surgery with a general gynaecologist was unable to find DIE tissue - £6,899

NOTE: I may require an Intermediate Robotic Excision of Endometriosis which is £11,907, however I will only know after the ultrasound and consultation.

4) Follow-up Consultation, which is only sometimes needed post-surgery - £245

I know that the world is going through very difficult times at the moment, especially in the UK, with the cost-of-living crisis and recession. There is absolutely no pressure on anyone to have to donate. These treatments will be life-changing for me after years and years of struggle. And, because many people have reached out offering support and help, I thought this page would be the best way you could. If we end up raising more than is required for my treatment, the remaining amount will be donated to the charity, Endometriosis UK. Whatever little you would like to give, will go a very long way. Thank you so much from the bottom of my heart. I also promise to be very transparent throughout this journey and share many updates, videos, and photos.

Lots of Love,

Vanisha x