4 Frequently Asked Questions About Endometriosis

Endometriosis is a condition that is usually associated with retrograde menstruation. As per my gynaecologist, 100% of menstruators have retrograde menstruation and our body finds a way to get rid of the blood that has flowed back into the body. In cases where the body cannot flush it out, the menstrual blood begins to form cysts outside of the uterine lining, causing endometriosis.

This is one of the many speculations because there is no sure way to know ‘why’ this happens.

Endometriosis affects different people differently. No two experiences are the same. More importantly, the treatment varies from person to person, depending especially on their age, marital status, and pregnancy. When I began sharing my experience of suffering from Endometriosis, I got asked a few questions about endometriosis frequently. Here are my answers to them.

I was taken by the shock that I was facing aches and cramps without my period date in sight. I had regular period. It was the usual three-day cycle. I began having irregular aches during periods in my twenties. By the time I was 25, I figured out that the pain is caused in alternative cycles.

The pain that I suffered from this time without having periods was unbearable. I went to the hospital, and got an x-ray done for kidney stones. The x-ray was clear, so I was advised to go for an ultrasound. The ultrasound report showed cysts in my right ovary which ultimately led to the diagnosis of endometrioma.

I have been informed by a fellow endo-warrior that normal cysts are different from endometrioma/ chocolate cysts. The latter causes more pain. I cannot vouch for this, given unlike her, I have only had endometrioma.

How long did it take to get a diagnosis after the onset of symptoms?

Immediately, if I consider the experience stated above. But, it should be noted that I didn’t always have cramps and pain during or between periods. I began having them in my 20s. I often consulted general doctors in various places. They usually understood my problems – lower back ache, relief upon passing gas or stool, cramps, and inability to function normally on the first day. They suggested that I take painkillers, as much as needed to soothe the pain.

Never miss real stories from India's women.

Register Now

I have absolutely no clue why I did not think of consulting gynaecologists. Perhaps, because of the taboo associated with it. Perhaps, I wasn’t sure how the gynaecologist will treat me. Like many people, I just assumed that I will safe in that space only upon getting married. Just by the stories I had heard offline and read online, I felt it was not a safe space for single women. Had I been to the gynaecologist earlier, it might or might not have been diagnosed before.

Anyhow, it should be noted that reports say suspected endometriosis, as the only way to confirm the diagnosis is to get a biopsy. Also, another endo-warrior informed me that her condition was initially dismissed as dysmenorrhea and she had to visit multiple doctors to get a diagnosis. I have been lucky, comparatively, in terms of getting a direct diagnosis.

What treatments did you go through?

Initially, I was put on a medication once at night after food. It stops menstruation and hence, there is no chance for retrograde menstruation. It was effective. I got an ultrasound after three months and there was a considerable decrement in the size of my cyst. The gynaecologist confidently advised me to follow the same course for another three months. But, when I got the next ultrasound report, the size had increased again and there was the development of new cysts.

I went for a second opinion. The doctor asked me to continue the pills, it won’t cause much damage. She gave me the option to change the medication which I declined as it might cause blood clots as a side effect. There are side effects to the medication I was given, as well. It can increase sugar levels and decrease bone density. So, it definitely cannot be self-prescribed in any condition.

My cysts showed no signs of improvement. So, I had a laparoscopic cystectomy after one year of diagnosis. Instead of going on the pills again, I chose to go for a hormonal IUD called Mirena. It is a long-term solution as it can stay inside the body for up to 5 years. The only side effect is that it can cause untimely spotting.

Did it improve the quality of life?

Yes. Definitely. The oral tablets stopped my periods, and hence I did not have to go through pain every month. Also, I was borderline diabetic at the time of diagnosis, hence the medication affected my sugar levels. I stressed a lot about it, which in turn affected my condition more. Apart from this, I had lower abdomen aches every couple of months. It was annoying in the beginning but I got used to it eventually. That’s the thing about a chronic disorder, you get used to the pain one way or another. But the intensity was extremely low, nothing compared to the aches I had while bleeding.

After the IUD implant, I have had spotting. I have mood swings similar to the ones I had before menstruating but the bleeding is very low. I am still just a few months old in this treatment, so I cannot speak for the long-term impacts. So far, panty liner does a fine job. The only thing is that it happens for a longer period of time 7-10days, which might go down eventually. The implant has helped me psychologically as well because oral pills were an everyday reminder of being sick.

The treatment makes me awkward socially, occasionally. When I mention that I don’t bleed every month, people call me lucky. But then, it’s a treatment for a condition that’s going to stay till I hit menopause. There are plenty of quirks to work out with. This is my answer to the questions, I am speaking from my personal experiences. This should not be generalised or seen as a guide to dealing with the disorder.

If you have any further questions, please comment/reach out to me. I will be happy to answer them in my capacity.

Comments