My Story: I have struggled with endometriosis, fibroids and PCOS for years

39-year-old Lydia Wanjiku Murage has been dealing with endometriosis, polycystic ovary syndrome (PCOS) and fibroids for a long time and opens up to Njambi Mungai about it.

When did it start?

My menstrual cycle started when I was 13 years of age and it was painful from the beginning. My mum thought it was just normal period pain experienced by most women but as I grew older the pain only increased. I could not eat or drink when I had my periods and had terrible cramps, diarrhea and vomiting. The pain progressed to a point I used to faint at times. Back in high school I could not attend classes for 2 days every month due to the pain.

All along I didn’t know what was wrong with me until mum took me to Kenyatta hospital to see a gynae who diagnosed me with endometriosis when I was 20 years old. We were advised to use painkillers and family planning pills to regulate the pain though it was not the cure.

How was the experience finding out the exact problem and dealing with it?

I was 30 years old when the second condition of PCOS developed. I used to feel a lot of pain (sharp pain) on my left side of the stomach whenever I was ovulating or on menses. I visited a gynae and upon conducting some tests they found out that I had 3 cysts on my left ovary that had grown hence the sharp pain. I was scheduled for a laparoscopy surgery to remove them as well as establish the extent of my endometriosis. After surgery they found out that endo had damaged some of my organs like the fallopian tube and the rectum. They also found out that endo had progressed to stage 4 and nothing much could be done medically. I was put on pre-menopause injections for 9 months to shrink the endo.  I did not receive my periods for the 9 months and it really helped. My periods resumed after 10 months and the pain was not as much as it was before.

Four years after the surgery and injections treatment I started experiencing the same sharp pain on my left side of the stomach and upon going for a scan it was found out that another cyst had formed on the same left ovary that had the previous ones. I was advised to wait and see whether it would burst on its own instead of another surgery. I waited for two years but instead of bursting it grew bigger and damaged my entire ovary and fallopian tube. Upon going for a scan they found out that not only did I have cyst but also 6 fibroids in the uterus.

I had C-section surgery in September 2019 and the ovary plus the fallopian tube were removed as they were damaged beyond repair. I am still in the healing process. I was devastated and asked God a lot of questions why? I was in denial at first but with time I have learnt how to cope with it.

How was the medical care and cost of treatment?

To be sincere endo is a costly affair and owing to the fact that there is no known cure worldwide I can only manage it through painkillers and regular gynae check-ups. I have used thousands of shillings in search of treatment. One thing that people should know is the three conditions may affect one individual as they all target a woman’s reproductive system. Without a good insurance one can be financially drained

What are the everyday struggles you deal with while living with this condition?

I will start with Endo, this has been my biggest struggle since when I was a teenager. It stressful to expect severe pain after every 28 days. It even affects my social life as I have to plan my activities around my period and I cannot attend a social event while on my period. Sex life too is affected and if you don’t have a caring/understanding partner you will suffer every time you engage in it since it is a bit painful. Endo can cause infertility and hence one’s ability to conceive is quite challenging especially when it is at an advanced stage. In my case I have been trying to conceive since 2013 and it has proven to be futile hence seeking fertility treatment assistance has been left as my only choice.

About fibroids and cysts the chances of them recurring are normally high even after surgery hence constant checkups are normally recommended.

What is your biggest fear in relation to this condition?

My fear has always been the infertility bit that has caused anxiety and emotional breakdowns at times. People used to fear talking about their families and kids whenever I am around fearing to hurt me but I have learnt to accept it. I am always happy for my friends and family members whenever there is a baby shower or a newborn.

What would you advice someone who suspects she might be in a similar situation?

My advice to the young girls and their parents is that whenever they suspect that the period pain is more than normal pain that can’t be relieved through normal painkillers it’s good to visit a gynae. Early endo management can save one’s reproductive system. Also the doctors advise those with endo conditions to try and have kids at an early age if they can to avoid the stress that comes with the disease later in life as one tries to conceive. Always have regular checkups and in case of any diagnosis kindly seek a second opinion where possible.

This month, EVE is focusing on reproductive health, you can follow the conversation and content on https://www.standardmedia.co.ke/evewoman/topic/reproductive-health.

Are you suffering from endometriosis, fibroids or PCOS? You can share with us or send your questions on [email protected] or inbox us on Facebook (@evewoman) or Instagram (@evewomankenya).