Manisha* was surprised when she started getting acute pain attacks in her abdomen. Investigations revealed she had endometriosis. Here she talks to us about the experience of dealing with it.
Can you tell me a bit more about your condition? When did it start?
In the first week of November 2024, I suddenly felt acute pain in my stomach that travelled down to my leg. The pain was comparable to what one feels when delivering a child. I tried various home remedies for the pain, but they did not help. I got some relief only after taking a painkiller injection. This was the first pain attack. I experienced around 10-12 such pain attacks between November and December. I would have to rush to the hospital at odd hours each time to take a painkiller injection.
How painful have been your menstrual cycles?
I started getting my periods when I was in the tenth grade and they were always extremely painful. I was on pain medication during my periods for a number of years. After my marriage and delivery, the period pain and cramps eased a bit. The flow fluctuated with different causes such as stress etc. But my lower back felt very weak, and the overall weakness started increasing with age. I started taking calcium and other dietary supports and felt better. I used to do yoga, cycling and swimming and that made me feel a lot better as well. 6-8months before the trouble started, I had no pain at all during my periods and felt fine. I did not realize where I was headed.
I ignored these terrible pains and the heavy flow because as women we are conditioned to expect pain during periods. I ignored the pain and dealt with it using heating pads and painkillers. I was told by my family and by doctors that after marriage the cramping and pain would reduce with sexual activity. It was always difficult to manage daily life during my periods. I could not get out of bed on the first two days due to the heavy flow, acute pain and nausea. It also caused low blood pressure. By mid-day on the third day, I would see the return of some energy and by the fifth day I would be back to normal. But yes, it was a challenge every month.
What sort of tests or investigations did you undergo to find the cause?
I underwent a battery of investigations in November and December such as basic blood tests, sonographies, ultrasound, a pap smear and checks for cervical cancer. None of the results showed anything abnormal. However, the pain was terrible and could not be ignored. There was no family history of any menstrual issues, and the doctor told me that it is not genetic.
I met many doctors and 4-5 of them suggested that removing the uterus would stop the pain from recurring but this was a solution without a diagnosis for the problem. I am 45 years old now. I was not keen on taking out my reproductive organs without any proper diagnosis.
By the end of December had consulted almost 6-7 doctors, several of them well-known but no one could diagnose the problem. I had to make do with painkillers each time I had a pain attack.
My last hope was the head of the endometriosis and laparoscopic department at a well-known hospital. I had visited her around 5 years back when I was planning for a second child. She had asked me to do certain tests at that time, but we did not go ahead with the tests and went for IVF treatment somewhere else.
I decided to visit this doctor for the pain. She tried to do an internal checkup, but the endometriosis had spread so much that there was no space for her to even put a finger inside for an internal examination. I was not feeling pain, but I felt the pressure of all the reproductive organs. They were attached to each other and there was no space in between the ovaries and the uterus. The extreme pain I had felt was due to a big muscle getting pulled because of the endometriosis surrounding it and that pain radiated down to the feet.
She also did a sonography and told me that she suspected endometriosis. She said it seemed quite extensive. An MRI showed that that I was at the fourth stage. The doctor said we did not have time to treat it medicinally and advised immediate surgery.
All this time I thought I was looking quite sexy and fit. I was eating less but I had told myself that my body was only letting me eat as much as it needed and I did not have to worry about anything. But in fact, my body was not able to process food. In the middle of having a meal I would begin to feel bloated and so I started eating less. I had poor appetite and digestion was tough. The initial stage of passing stools was difficult as the endometriosis had spread towards my rectum and intestines as well.
Can you tell us about the surgery?
I got admitted to the hospital within two days of this diagnosis. The surgery was done in the first week of January 2025. The doctor said that the endometriosis has spread to my intestines and gone behind the rectum. It was affecting my bowel movement, my diet and sleep as well.
I needed a hysterectomy. My uterus was removed along with one ovary and the doctor cleaned the intestine, stomach and the rectum area.
There was a risk while doing the surgery because the nodule which is the area of the endometriosis was big, and it was quite close to the rectum area but my doctor handled it well and there were no complications in the surgery.
Post the surgery the biopsy report showed no malignancies anywhere else.
The doctor explained to me that endometriosis is a dormant disease. It takes approximately seven years for a woman to actually show any symptoms that may give a clue that she is developing endometriosis. Maybe when I was planning for the second child, I was not successful because I was at the initial stage of endometriosis.
What was your reaction to the diagnosis when you heard this diagnosis?
I was totally unaware of the disease, so I asked the doctor to explain it to me which she did very clearly with pictures and a demo unit. She also explained how the surgery was going to be done.
I was very upset to know that all my reproductive organs would have to go in my 40s. I was not planning another child, but I was not sure that what kind of loss and change I would experience since with the hysterectomy I would go into a perimenopausal stage when all along I had normal periods. Losing my organs was difficult to deal with but when I read the biopsy report I realized it was safer for me to extract them. Also, not having regular periods post the surgery would free me from the stress and pain I felt monthly.
I have had no complications post the surgery and the doctor has assured me that I will heal and recover with time.
How did your family deal with the diagnosis?
When my mom and dad got to know they were fine because we had a definite diagnosis after two months of the terrible pain for which I would carry painkillers even when I went for a walk. They were happy to know that endometriosis can be cured, and it is not life-threatening.
I am a single parent with an 18-year-old daughter. She has been a tremendous support to me and has taken great care of me through the whole ordeal. She used to be quite scared during school hours as she knew the pain attacks could happen anytime. She was the one who would take me at all odd hours in the night to the hospital for the painkiller injections.
What medication are you currently on?
I had a course of antibiotics for 10 days after the surgery. But now it is only multivitamins and a medicine which contains vitamins, minerals, and nutrients that help cope with the symptoms of menopause. It also maintains bone and joint health and regulates hormonal activity.
Did you see any other specialists like a physiotherapist or an occupational therapist post the surgery?
I did not as my doctor did not say it was required. She said in my healing journey I had to focus on my diet and rest for at least the first three months. A sensible diet is very important. My doctor has advised me to have more fiber, iron, protein and roughage in the right proportions in my diet. Eating well will help in the healing. She said it was fine if I gained weight right now as I could always lose it later.
I was told that I could take up yoga definitely for pelvic exercises once I feel that I'm up to it. The doctor also said I could start with cycling.
What changes have you made to your lifestyle post the surgery?
I exercise very regularly now. I was always very conscious of my diet but now I have modified my diet according to the doctor’s advice and am eating the right kind of foods I need to nourish myself. Good quality sleep is equally important, and I try to keep a good sleep pattern. I will need six months to recover completely.
How did you manage your recovery mentally and emotionally?
Stress can aggravate endometrial flare ups and so I have focused on reducing my stress levels. I do that by meditating regularly. Reading and chanting helps me to stay peaceful.
I was physically in a lot of pain for a month after the surgery. I also felt emotional about losing my organs and with that my feeling of femininity. I am a very active person and being on bed rest made me feel very low. It was important that I worked to get my physical and emotional energies in balance for my healing to happen.
Who were your support systems though the whole experience?
One needs a lot of moral support at a time like this. Having somebody by your side emotionally is as important as the physical support My parents and my daughter were my big support through the whole ordeal. My friends knew what I was going through and rallied around me and helped me to keep my spirits up.
My doctor gets the greatest credit for diagnosing my condition, explaining everything so patiently and preparing me for the surgery so well. She educated me on the risk aspects and helped me take an educated decision. I have stopped getting my periods and don’t experience any pain.
What advice would you like to share post your experience?
Pay attention to anything that is not aligned in your body. Heavy or painful periods are common symptoms of endometriosis. Though the doctor has told me that it is not a hereditary or genetic condition I have still done a USG for my daughter just to keep a check on her health.
Do you have any worries about the future?
I am not worried about the future. The right treatment has been given to me. I am focused on being relaxed and recovering well to get back to my normal life.
As told to Smita Vyas
* Name changed on request
