Prachi*, 43 from Mumbai, India talks of her journey of pain due to adenomyosis, endometriosis and uterine fibroids, the treatment and complications.
Initial symptoms and Diagnosis
I’ve always had painful periods since menarche. During school days, my grandmother would apply hot cloth compresses on my back for relief. At times, I would leave it on for long, failing to notice that my skin had become red hot from it. Later on, I came to rely on an electric heating pads and painkillers for those first 3 days of my cycle. I found out I was allergic to certain analgesics and overtime, became resistant to others. The only relief these past few years has been Combiflam, which I took 3 a day.
At times, I would get mid-cycle bleeding, which made me apprehensive of ever putting on white trousers. I never left the house without pads and party-liners in my purse.
During a routine prenatal check-up for my 1st pregnancy, the ultrasound detected endometriosis but it was unremarkable and required no intervention. I went on to have two seamless pregnancies with normal vaginal deliveries.
In 2009, on a routine pap smear, the cervix smear showed inflammatory cells. Over the years, I had multiple episodes of cervicitis.
Between 2012 and 2014, I also had recurrent UTIs with the only symptom being ache at a specific site. One time, the pain was very sharp and acute on my right side lower abdomen. I thought it was appendicitis but the Sonographer revealed it was a fibroid in the uterine wall along with adenomyosis. My Gynecologist started me on oral contraceptive pills which helped regulate my periods, control the pain and stopped the mid-cycle bleeding. I was told to take a break from the pills every few months, but during that break, the pain would return. I took the pills for 2 years.
On a follow-up sonography, it showed that the fibroid had continued to grow. In 2017, I had a severe attack of pain. By this time, I could not tolerate Combiflam any more so I switched to Tylenol. The fibroid had now become bulkier, and my endometrium wall had thickened significantly. Ovarian cysts had also starting occurring. My Gynecologist started me on Dienogest tablets because she wanted to delay a Hysterectomy since I was still young. After 54 weeks of Dienogest and no relief, I was treated with Depo Provera injections. The ovarian cysts had gone so we waited to see if there would be any natural progression to menopause and reduction in the fibroid. In October 2018, there was spotting again and this time, my only option was a Hysterectomy. So the decision was made to remove the uterus and the cervix , she was take a call on the ovaries during surgery itself. I was explained all the side-effects and complications of early menopause and sent home.
Surgery and Treatment
On the day of the surgery, my parents came along with me. It was to be a 2-hour surgery with a few days in the hospital for observation. I was calm all along until I was wheeled into the OT and they began prepping me. Staring at those ceiling lights, panic set in for the first time. The last thing I remember is the sore anesthesia injection. When I woke up, I couldn’t see or feel my limbs or breathe comfortably through that oxygen mask.
During the procedure, my doctor decided to remove the fallopian tubes as well, but spared the ovaries. Apparently, the uterus had become so bulky and enlarged, it was pushing on to the intestines, bladder and rectum. The reports showed that my uterus weighed 118gms, whereas an adult uterus should be around 60 gms.
I recall the pain after the anesthesia wore off and clear white discharge that first day. On the second day, after my meal, gas pain kicked in and that was excruciating. From then, I was very careful about my diet; I only had home-made vegetarian light meals for the next month or so. After 15 days of rest, I slowly got back to my daily routine and commenced working from home.
Related complications
At present I am fine. I do feel a pull sometimes at the lower abdominal area when my abdomen is stretched. Since there were no external stitches, I’m lucky to not have any external physical scars.
When I was on the Depo provera injections, I found myself having low moods and breaking down frequently. The depression was hard to deal with. I would find myself crying in the middle of the night! I realized that I could not afford to go into chronic depression and so would distract myself by binge watching Netflix, going for a drive etc.
Learnings in managing in your condition that you wish you knew before
Not really. I was a good patient who did my follow-ups and tests etc. on time and kept my Gynecologist updated about any changes. There was nothing I could do to prevent the issues.
Complementary therapy
Post the hysterectomy, I tried Arnica which is a homeopathic medicine for pain relief. It also helped with the fatigue but I noticed that my discharge was not stopping and there was complete loss of taste in my mouth. On discontinuation of Arnica, both these issues resolved.
Family support
My parents have been there for me physically; my sons made sure I never exerted myself but emotionally I had to rely on myself! It was tough to be positive! People would say, “stay positive” but it was easier said than done. I found comfort in friends who were very supportive too!
Challenges faced
The two major challenges for me were:
- Fatigue. Getting my energy back took a long time, almost 2 months. Most days, I could barely last till evening. I hated being sick and lying around all day. I have two kids who rely on me and I did not want to take favors from others or depend on anyone. Taking Menopause tablets truly helped me get through the day better.
- Insurance claim. Filling out the insurance claims’ forms and following it up with them was extremely tedious for me. It was like nothing I had done before.
Advice to other women going through something similar
My advice would be to:
- Be informed of what’s happening to you. Do this by asking lots of questions to your doctor. Don’t go around googling and reading random sites. If you do find information, confirm it with your doctor always.
- Trust your doctor! This aids in joint decision making and eases the mind.
- Take care of your health! Do the recommended tests and check-ups for you at your age. If there is any issue niggling at you, get it checked out and monitor it.
- Give yourself time to heal! The recovery period can be a crucial time for your body, so don’t rush it. Ask for the necessary help, never feel like you don’t deserve the rest.
* Name changed on request
