My journey with endometriosis...

It all started over over 24 years ago. In fact I had been going to see my GP for years before I was finally diagosed! I was 19 years old and I started suffering with very painful periods. So much that the whole family would know, which in those days in my culture was an unusual thing to happen, often an embarrassment. My GP would attribute my symptoms to stress of studying medicine or the fact it was normal and told me to take painkillers...which I was. My concerns were disregarded by everyone including doctors.

Then years before leading up to the diagnosis, I started getting almost daily left sided pelvic pain and urine infections. I was doing a Gynaecology SHO post during that time and one particular weekend, I had to go home from the oncall, only to hear derogative comments from the Consultant that why was a girl like me even getting Urinary Tract Infections! That comment haunts me until today. Ironically 6 months later, I was found to have an abnormal scan and due to the abnormalities, an urgent referral was done within 2 weeks, I underwent laproscopic surgery for adhesolysis, laser ablation of endometriosis, and removal of endometriosis including chocolate cysts from the left ovary and within the pelvic ligaments. There was a lot of disease. I was also found to have a left hydroureter, behind which there was endometriosis too.. That area was too delicate to treat as there was a risk of rupturing the hydroureter. It had already become dilated and tortuous for unknown reasons. I thought I was cured from endometriosis. But it never stopped after that only to keep coming back so quickly after surgery. It was very aggressive. Over the last 20 plus years I have undergone 10 plus surgeries. I was not suitable for homronal treatment as I had obstetric cholestasis during pregnancy. I was so desparate to get my life back and took a risk and still tried hormone treatment but my liver function tests became abnormal on the contraceptive pill. I was offered injections but I refused to have early menopause induced by drugs such as Prostap. I had seen so many of my own patients walk in to the surgery lookin aged with Prostap and just feeling awful.

Finally a few years ago I signed a consent form for a hysterectomy. My life was becoming so difficult. I was unable to go to work on days when I was bleeding. I had constant pelvic pain and Urinary Tract Infections every few days. I was suffering with abdominal swelling which was diagnosed as pelvic congestion syndrome due to the left ovarian varices. I was offered ovarian vein embolisation too and then told I would never be able to have any MRIs for the rest of my life. Two weeks before the hysterectomy I cancelled the operation. I am so glad I did. I was seen by my Urology team for Urine infections, I was found to have obstruction from the bladder sphincter and diagnosed with Fowler's syndrome which developed due to the gynaecological surgeries which I had. I was offered surgery to put a pacemaker in my spine which would control by bladder and I was literally written off to never have a hysterectomy as it would mean that my bladder will never work. I was even offered a surgery to re direct the urter to come out of my umbilical cord in order to resolve the symptoms. I must admit that was the lowest point in my life. I wanted my life to end. I could not cope any more.

It was not an easy journey. Every year I would think that the next year may be better but it became worse. I am glad I changed my mind about the hysterectomy, the embolisation and the bladder surgery.  I decided to stay on prophylactic antibiotics for infections and try self bladder re training and pelvic floor exercises. 

 I wanted to buy a few more years for myself and wanted a better quality of life. I started to do research. I wanted to see if there were natural ways to help alleviate symptoms. I bumped in to various options like probiotic supplements and vitamins targeted for the menstrual cycle. None of these helped that much. I was taking Zince and Magnesium supplement and I did find some help form them but the long list of ingredients in these supplements worried me. My daily life became a concoction of supplements, vitamins and mineral supplements, paikillers, reflux drugs like PPIs, gaviscon and so much more.  I had basket full of drugs and supplements! Everything revolved around endometriosis and my bladder infections. I could not go to work on many days and some days I had to cancel work from the severity of pain and severity of infections. It was a long nightmare.

Eventually I came across something promising...The Microbiome. I started researching what the microbiome was. I wondered if there was a connection between Microbiome and the development of endometriosis and fibromyalgia, just like there was for IBS. Afterall, in each of these conditions, pain was a common factor and each one of these were still not fully understood. I happened to also suffer with IBS and fibromyalgia. I had a very poor immune system and I was positive for ANA antibodies which meant that I was always suffering with many tendon and join inflammations. I would end up with steroid injections. Furthermore I noticed that on the second and third day or my menstrual flow, I would suffer with severe stomach pains and bloating that were almost colic in nature. My stomach used to swell as if it was 4-5 months pregnant. When I did more research, I found that women with endometriosis tend to have Small Intestine Bacterial Overgrowth (SIBO) during their menses. So now I was having to think of managing my IBS, my joints, my SIBO too! I concluded that the years of antibiotics had caused a microbiome dysbiosis in my gut. This was causing a lot of the other inflammatory conditions that I was suffering with as well as the gut symptoms.

After this I looked in to treatments for IBS an SIBO. Both seemed to respond to shor term treatment with the low FODMAP diet. I started that and followed it religiously for 8 weeks. My IBS, endometriosis symptoms, pelvic pains and SIBO all calmed down. I was so happy with the outcome, I could not stop the low FODMAP and ended up following that for 6 months. Patients should not follow it for longer than 6-8 weeks. I did end up with nutritional deficiencies including iron deficiency. After six months I re introduced foods wit success. I followed the general concepts of the low FODMAP diet and tried not to combine too many FODMAPs in one meal. This kept my symptoms under control.

This however was leading to too many restrictions. I started to suffer with scalp issues, hair loss and joint inflammations. I changed my diet and started  re introducing foods to help grow my good microbiome. I am still working on that. As I am still taking prophylactic antibiotics, this still proves challenging.

One another break through for me was discovering Intermittent Fasting. I cover that in a separate section. I cleaned up my diet fully and started fasting and now I have been fasting for one and a half years. I followed the guidelines of how women should fast according to their menstrual cycle. The fasting helped me lose weight and I also felt a major reduction in inflammation in my body. My monthly bleeds became more manageable and for over a year now, I have not suffered any pelvic pain! Almost every other month I used to grow major haemorrhagic cysts which were causing pain and partial ruptures. All that has now stopped and I have been relatively better controlled in my symptoms than ever before.

A new update to my journey in January 2025:

I am very sad to share with my readers that I have now been diagnosed now with bowel endometriosis for which I am undergoing staging. Scans are already indicating deep nodules (DIE) which are suggestive of stage 4 endometriosis. This week I have completed a SIBO test. Next week I have gastroscopy and colonoscopy booked. Following week is an MRI for more information on the extent of spread. I have already met my endometriosis team who have prepared me for surgical intervention. This is will be following an MDT meeting where other specialists such as Colo-rectal team will be involved. Stay tuned to find out more as investigations unfold...