After a year of experiencing symptoms, I was diagnosed with endometriosis at the age of 37. Despite undergoing multiple surgeries, including a full hysterectomy, I still struggle with symptoms related to bowel endometriosis. In my journey to manage these symptoms, I have found relief through the use of Full Spectrum CBD and cannabis. Here, I share my story of diagnosis and the steps I have taken to manage my condition.
Before the diagnosis
Before being diagnosed with endometriosis, l experienced heavy periods as a teenager, but didn’t think much of it. I went on various contraceptives to manage my periods and didn’t experience any issues until I came off all contraceptives at 36.
At that point, I started experiencing IBS-like symptoms and bleeding from my back end, which I initially thought was a haemorrhoid. Despite living a healthy lifestyle, the symptoms persisted and I eventually became bedridden.
After being fobbed off by a doctor who thought I just had an infection, I was prescribed buscopan to manage the contractions in my stomach. I used Full spectrum CBD to manage my mood, sleep, and pain, but still experienced symptoms. The best CBD Oil for endometriosis needs to be a full spectrum as it contains 0.2% THC which is most effective for managing pain.
During what I now know as an endo flare-up, I was in severe pain and considered calling an ambulance because the pain felt like my appendix had burst. I went back to the doctors for a third time and finally was booked for an emergency CT scan after explaining the severity of my pain.
Diagnosis of Stage 4 Endometriosis
Luckily the C.T scan showed a 4cm endometrioma in my ovary and I was told I would need surgery to have this removed. It was a relief to finally after probably a year get a diagnosis.
I was told that the surgery would determine what stage of endometriosis I had and that if it was stage 4 I would have to go for more surgery with a specialist endometriosis surgeon.
At this point I started to realise that the bleeding which was daily and heavy from my back end was endo related and knew that I would most likely need more surgery.
The surgery confirmed it was stage 4 and quite severe however they removed the endometrioma and I felt a lot better as I was no longer having the extremely painful flare ups.
I was prescribed various pharmaceuticals including naproxen which I needed to take lansoprazole to protect my stomach lining and also an anti nausea tablet plus codeine. I did try these medications for a few weeks however codeine made me constipated which isn’t good for bowel endo and I didn’t like knowing that naproxen could cause issues with my stomach. Especially when it didn’t really do much for the pain anyway. Therefore I just stuck to using CBD paste and high THC RSO Oil . These worked as an anti inflammatory so although they didn’t cure my endo they helped me to keep functioning.
I would make my own CBD suppositories by getting a gummy mould and adding CBD paste and some melted coconut oil, freezing them and popping one up my bum. This brought a lot of relief as the Cannabinoids were being absorbed through the blood vessels in the anal canal. CBD suppositories can also be used vaginally and are great for women who experience pain during intercourse.
My new surgeon who was going to treat the stage 4 endo that the first surgeon couldn’t remove put me on a menopause injection to help manage symptoms whilst I waited for surgery. This really did help by knocking the pain level from an 8/10 to a 4/10.
I had to wait 3 years for my next surgery and it really impacted my life. I needed to work so would need to conserve my energy for work and then after work I just had to go home. I think I had chronic fatigue as although previously exercise made me feel more energised, now it had the opposite effect where by body was in pain and I just felt absolutely exhausted.
I didn’t have much of a social life and struggled in romantic relationships as I just felt ill all the time. If I hadn’t of used CBD there’s no doubt in my mind that I would of had to quit work. CBD helped me to manage my mood as this chronic disease can cause depression.
My second surgery was in February 2022 and they removed my uterus along with all traces of endometriosis. It was a 6 hour operation and as I was using a lot of CBD I recovered within a week and was back at work. I did feel better but I could still feel the endo in my bowel. I was told though that they couldn’t see endo on my bowel.
This was very confusing for me as I knew I was bleeding heavily from the bowel but after a couple of colonoscopies I was told they also could not see endo. So where was the blood coming from? I wasn’t imagining it.
By July that year the pain started creeping from a 4/10 to a 6/10 so I knew it was growing back. I had an MRI scan in September and the results in October confirmed I had another endometrioma in my ovary again. By this point I was writing in my diary everyday what I was eating, drinking, pain levels and toilet habits. 4 out of 7 days I was in 9/10 pain where I couldn’t function. I knew the wait list would be years on the NHS so was very worried. At the end of October I had to call an ambulance as the pain was unbearable and I wondered if the endometrioma had burst.
It was a horrific experience and the hospital couldn’t really do much as the medications they gave me weren’t doing anything I just had to wait it out. My family after seeing me in this state insisted that I go private and luckily I had an endometriosis specialist surgeon at the Spire in Elland near my home.
My private doctor put me back on the menopause injection whilst I waited 6 weeks for the surgery which helped a lot. After this third surgery Dr Gan removed my ovaries, scraped endo from bowel and also removed it from my bladder and other areas. He confirmed it was very severe and that it was definitely on my bowel.
This surgery although I was still up and about after a week was a lot harder to recover from as I felt like Id been scraped out like a melon. I literally could hardly move for 4 days after.
Moving Forward with Endometriosis
I was told that 1/20 women get endometriosis back after menopause and unfortunately I’m in the 5% that have. I’m grateful that my private doctor takes this disease very seriously and I will be seeing him again in August. His concern is that the scar tissue could end up blocking my bowel which could cause me to loose a kidney or need to have bowel reconstruction and have a stoma.
I have tried various different diets over the 4 years including gluten free , dairy free, meat free, vegan, pescatarian, wholefoods and water fasting. In my experience sugar makes it worse for me but even when I have been extremely vigilant with my diet I’ve still had symptoms so I don’t think personally that diet can cure it although some women say that it has improved their symptoms.
I really need to plan ahead now in case I get ill again as if I am ill I need to be able to work from home and not have the stresses of managing businesses. This is why I now participate in cryptocurrency projects that help to give me an income with very little effort and I can do this anywhere and anytime as long as I have a phone and internet.
Helpful Endometriosis resources.
I’m so grateful for the endometriosis community who have supported me whilst managing this chronic disease. I’ve been very active on the Facebook endometriosis groups which I encourage you to join.
Nancys Nook is also a great resource to learn more about this disease as Nancy herself has endometriosis. You can find lots of information on her website about diagnosis, treatments and supplements.
If you are experiencing endometriosis symptoms and want to try CBD feel free to use voucher code “ENDO” to get 25% off CBD Products at Excite For Life.