Jaya Jamrani, 42 is a senior Marketing Professional who had painful periods since she was a teenager. A severe abdominal pain attack led to a diagnosis of endometriosis. She spoke to us about her experience in dealing with endometriosis. She says, “Endometriosis has helped me to become a better person with a healthier life.
Can you tell us more about your condition?
I suffer from endometriosis. It is a condition with very painful periods, infertility and highly disturbed hormones which lead to lack of energy, acne, weight gain etc.
What were your early symptoms?
I've always had extremely painful periods. In fact, I used to wonder how women went about their day with periods. I remember watching the Jhansi Ki Rani serial and wondering how the Rani rode a horse. Did she not have periods? Unfortunately, people did not understand that painful periods are not normal at any age. Eventually the doctor's diagnosis happened only when I landed up in the Emergency Room.
When were you diagnosed? What kind of tests did you undergo?
I was diagnosed when I was about 26 years old. I've always had painful periods but this one time particularly I had severe pain in the right corner of my abdomen. I was rushed to the ER in Mumbai. Suspected of appendicitis, I was admitted to the hospital. 16 years ago, there was little knowledge and information about endometriosis, and I was in the hospital for three days while they tried to find the problem. They gave me lots of antibiotics and painkillers to deal with the pain. A CT scan and an MRI were done but gave them no idea of what was wrong.
A senior, well-known gynecologist who had been travelling came back on the third day and said there was an endometriotic adhesion or cyst. He said it was probably hidden behind my ovary which is why it could not be detected in an ultrasound or an MRI. But there was evidence of bleeding in the MRI. They did an emergency laparoscopy which showed that a cyst had formed. At this time, I was diagnosed with fourth stage endometriosis.
Related Reading: How is Endometriosis diagnosed
What was your reaction to the diagnosis?
First of all, I had never heard the word itself, so I googled and tried to understand it. People just tell you that women need to have a higher tolerance for pain and it was difficult for me to hear this. My own family has doctors who thought it was not a big deal. They asked me to go on hormonal pills to stop my periods and said it will sort the problem. To them it was just pain, not a life-threatening disease. However, for me, the pain kept increasing over time and was debilitating.
I de-escalated the problem and went on living my life the way I was living it as a young person - partying, drinking and eating all kinds of junk. But my condition after the first surgery started getting worse.
How did you deal with the pain?
I would love to say will power! Seriously speaking, in school it was harrowing. I could not understand why no one else had these issues. I could not participate in sports and games as I could not attend practice sessions regularly. I started having medicine for the cramps, used hot water bags, missed school days and had to sleep through the day. It was also very embarrassing as I had a very heavy flow on the second day and could easily stain myself. When I started working, I was dependent on painkillers to function through the day.
Endometriosis is difficult not just physically but also takes an emotional toll. There was a time when I could not travel because I didn't know when my period would come and I would be stranded. I missed a lot of close friends’ weddings and important events because I would suddenly have this debilitating pain, and I could not do anything.
Once the endometriosis was diagnosed, I went on hormonal medication to stop the periods. I preferred that to having to deal with nausea, mood swings, anxiety, acne and weight gain.
Post the diagnosis how did you deal with the endometriosis?
I went through a series of surgeries over the next few years:
The first surgery:
The first surgery was a laparoscopic surgery done in the ER for diagnosis, that entailed a cauterization where they burnt the tissue that they saw growing. Everybody said that I’d be up and running in two weeks’ time. However, the cyst was just cauterized but not removed completely. Since the cyst had burst there was a lot of blood in the abdomen so the doctor couldn't really see clearly all the places where the endometriosis had grown.
Within a year my pain was back and with such extreme intensity that I couldn't function. I had to take many days off from work. The degree of painkillers kept increasing to the point that I was on opioids. Eventually, the doctor started giving me long-term birth control medicine called gonadotropins and hormonal measures due to which I wouldn't get my periods for six months to a year. I realized that gonadotropins can be dangerous and impact your health badly in terms of body weight and blood pressure. Due to this high level of birth control medications and hormones, my blood pressure started shooting up and I had to start taking medication to control it.
The second surgery:
The second surgery was again a cauterization surgery within a year of the first one. At this time the doctor told me that I would have a problem conceiving a child normally. I advanced my plans of having a baby and right after the second surgery we started IVF treatment, and I tried it for a year.
During IVF treatment the body is pumped with a lot of hormones to produce more eggs. Those hormones accelerated the endometriotic growth again. Within a year my pain was back with great vengeance, and it just seemed like a whole cycle of pain, surgery, IVF was beginning again.
Third surgery:
Thankfully for me, the third surgery which was also a cauterization one was followed by my second round of IVF, and I conceived. After conception since my body was filled with good hormones, the next few years after the baby was born were pretty good. I had forgotten about endometriosis pain. I think it was the third year after my delivery that I started getting very painful periods again.
This time the doctor put me on regular birth control pill, (not gonadotropins) and told me to take the pills without the usual break that you take after 20-22 days before you start the next cycle. I was on non-stop birth control pills so that I wouldn't get a period and that started impacting my blood pressure once again.
Fourth surgery:
My fourth and last surgery was with an incision expert whom I found with great research. It’s this surgery that eventually relieved me of the deep pain in my pelvis and other areas of my abdomen. Incision surgery does not burn the surface of the area where you see endometriosis growth but takes a scalpel and takes out it out and almost quarantines it out of the body. All other options are like putting band-aids on the growth and the endometriosis will keep growing.
What changes did you make in your lifestyle post the third surgery?
I started researching on alternate ways of managing endometriosis. I started eating clean. I went on a vegan diet with more green vegetables and started drinking celery juice in the morning as a detoxifier. I did a lot of work around managing my cortisol and oxytocin levels. I worked on my mental health and exercised regularly to release good hormones. The clean diet and exercise really helped me. I stopped drinking alcohol which has been a big game changer for my health. The fact that the lesions that are sometimes visible in an MRI had become smaller and had also reduced in scope gave me the impetus to carry on with this approach.
What was the next stage in your treatment?
All the lifestyle changes I made helped me to control the endometriosis. The MRI we took at that time showed no new growth. However, there were still parts in my body near my ovaries which were very painful. This was because of two reasons- one, the endometriosis growth that had accumulated over the years and two, I had adenomyosis which is basically a very bulky, heavy uterus. This happens because a similar kind of growth starts growing on the sides of your uterus making it very painful. Again, periods were very difficult for me.
Faced with this situation, five years back I took the well-thought through and well-planned decision to go through a hysterectomy and get rid of my uterus. It was in this surgery that I found a fantastic incision expert in Mumbai. Touch wood it's been almost six years now and the endometriosis has not grown as per the MRI reports. The hysterectomy took its time in recovery, but it was a good decision because now my blood pressure has also come to normal. I don't need to take hormonal pills anymore.
What kind of support did you seek from the medical community and from other sources?
I found an online community that helped me find the right doctor in India who is an incision expert. He was empathetic about my needs as an endometriosis patient. There are many such communities online that can guide you and help you find the right doctor.
My doctor showed me the video post-surgery and told me the places where he had found the lesions and removed them. He was honest and told me that there may be some endometriosis left over in my body.
I was also dealing with IVF and its associated stress. I coped with it by seeking help from online communities that equipped me with knowledge on how to deal with it.
What medication are on you currently?
Currently I have to take blood pressure medication. However, the dosage is half of what it was. I am not on any mediation now for the endometriosis or the adenomyosis.
Did you consult any physiotherapists and counsellors or therapists post your surgeries?
Physical therapy post-surgery is very important. I was lucky to have found a wonderful physiotherapist who helped me strengthen and rebuild the pelvic muscles. Exercise such as light yoga, Pilates, swimming help. Even now I feel that if I do strenuous running or weight lifting it doesn't work well because my pelvis is still not very strong.
I went to a therapist post my second surgery and also multiple times after that right up to my final surgery for the hysterectomy. This helped me to get peace, accept my condition and develop empathy towards myself.
Was this an inherited condition for you?
On my mother's side there are a lot of women who did have painful periods and probably never got diagnosed. They had to go through early hysterectomy and those sort of solutions. But I don’t know if it is an inherited condition.
What are the long-term changes you have brought about in your life?
Lifestyle changes are a must, and I looked at them positively. At one point I kept thinking what good is going to come out of this really painful and difficult disease? I think it allowed me to be kind to myself and take care of my body. I probably wouldn't have been on this journey of mental and physical fitness if it was not for my endometriosis. It helped me develop a lot of empathy and deep knowledge of the connection between diet, the human body and medical science.
I think emotionally it was difficult especially because there is still a taboo around things to do with uterus and periods etc. I was very lucky because the final doctor I found really understood what I was going through and had immense empathy towards the pain and the recovery from the surgery. Therapy and counselling allowed me to accept myself the way I am and not be bitter or angry
Family support helps. My mother was a strong support to me after my last surgery. The biggest support is a companion who understands the situation because when endometriosis flares up and you are in pain, intimacy is not on the cards. In my case I also had the whole stress of wanting to have a child through IVF etc where I had to lean on my husband a lot.
Apart from my family, online support group became my lifeline. I researched and studied a lot and that helped me feel empowered about what I could do with my body
How did you manage at your workplace?
I was very lucky on the work front. On the suggestion and input from a colleague, I wrote a note to my team and my boss explaining my difficulties and what I was going through. They allowed me to be a bit more agile with my working environment especially with the number of surgeries and IVF. I had a supportive workplace, but I also ensured that I do not see it as a privilege but as a responsibility to deliver back to my organization.
What is your current condition?
Presently I am in a good condition. I don't think I can say that I am cured. It is a condition that you manage so I need to continue to take care. In fact, about 6-7 months ago I was back in the hospital with extreme abdominal pain. It felt like extremely sad case of deja vu with people saying it's appendicitis and me saying it's not. Thankfully my doctor checked me and said he could see some adhesion on my right ovary in the ultrasound. This was probably causing the pain. I went deeper into my detoxing and my diet approaches and that helped calm down the flare up and thankfully right now I'm okay.
What advice can you give to women who are suffering from endometriosis?
First of all, extreme love and affection for you and know that you're not alone. My advice is first find your support group. There are many available online. Find one that works for you.
Secondly, talk to your parents, your family, the immediate people who are going to be around you, including your workplace. Make the invisible disease visible, not to gain sympathy or privilege, but to gain understanding and work around it.
Next, find a good incision specialist, face the fear and get the surgery done. However young you are, the earlier you get incision done in my experience, the better it is and then you can work to stop the growth.
The fourth thing is to eat clean and exercise.
Both physical and mental well-being are important. Equip yourself with a lot of information and don't run away from it. Do not trust the doctor just because he's a doctor. It's important to understand your own body and your response to certain things.
Do you have any fears about the future?
During the process of my healing and therapy I learned that it's important to accept your pain rather that fear it. Whenever I have a flare-up, I take a hot bag, turn on Netflix, take a day off and just embrace the pain. When things go wrong it's very normal to think you have done something wrong for it to happen again. Do not be harsh on yourself. Just accept and give yourself the nurturing and caring that you need and then restart.
In the end I want to say that endometriosis is physically, mentally, and also sometime financially very draining. Treat this as a reminder to yourself to be fitter and take more care of yourself. There are many women communities online where you can find support and encouragement to be able to build a normal life and live with this disease without fearing it. It is a long process but one that will shift you to a fitter, healthier and more fulfilling life.
As told to Smita Vyas Kumar
