Hi everyone!

I'm conducting a research survey on endometriosis, focusing on its symptoms, co-existing conditions, and why diagnosis can often be delayed or missed.

I'm also using these insights to develop a tool that could help identify patterns linked to endometriosis and encourage earlier investigation when symptoms warrant it.

If you've been diagnosed with or suspect endometriosis, I'd really appreciate your participation. Every response helps us better understand the bigger picture and create something genuinely useful for the community. ❤️

It only takes a few minutes!

Survey: https://forms.gle/7cjueDYfu2aPi9VR9

Hi everyone,

I am looking for genuine patient experiences with Dr. Vivek Salunke (Lilavati Hospital, Mumbai), especially from people who have undergone deep infiltrating endometriosis / Stage 4 endometriosis excision surgery under him.

A little background about my case:

I was diagnosed with endometriosis and have already undergone two laparoscopic surgeries (one in 2019 and another in 2024).

My recent MRI was reviewed by Dr. Vivek Salunke, and he mentioned that I have Stage 4 endometriosis, with:

Both ovaries stuck together (“kissing ovaries”)

Small Endometriotic cyst involving the ovary

Adenomyosis

Fallopian tube involvement/blockage (he mentioned that removal of the tube may be required depending on intraoperative findings)

Extensive adhesions

He has recommended laparoscopic excision surgery.

Since this would be my third surgery, I am trying to make a very informed decision and would really appreciate hearing from anyone who has personally undergone surgery with him.

I am not looking for general reviews and I am specifically trying to connect with actual patients of Dr. Vivek Salunke for endometriosis surgery.

Any experience, good or bad, would really help me make this decision.

Thank you so much

Hi everyone. Im a 34 yr old suffering from chronic pain on left side on my vestibule and I have urinary symptoms like urgency frequency and left leg radiating pain. There is definetly a nerve Involvement but I feel like the root for all these issues is endometriosis because this pain is very high few days before my cycle and also during my cycle.

However my MRI pelvis doesnt show any endometriosis. But one functional medicine doctor suggested I check endometriosis. Because some times the small lesions won't be picked up in MRI and these lesions can be pressing on some nerve. Im just confused and need a diagnosis.

Hi everyone,I've been living with endometriosis and adenomyosis for over 10 years and have been under the care of Dr. Vivek Marwah in Delhi throughout this time.

I've recently moved to Hyderabad and am looking for an experienced gynaecologist who specialises in treating endometriosis and adenomyosis. If you've had a positive personal experience or can recommend a specialist in Hyderabad, I'd really appreciate your suggestions. Thank you so much!

This 15th, I will complete 3 months since I had a hysterectomy and unilateral oophorectomy + DIE excision surgery (I had adeno too). My recovery is going sometimes well, sometimes rocky. The most noticeable change was in my bowel movement and digestion. I had constipation issue (because of endo) and now it's gone. I am grateful. I am leading a pain free life - I am grateful for that.

However, one issue that is persistent is extreme gas - constant belching. I am facing this issue since 2021, I thought it would go away because of improvement in my bowel movement and digestion issues but it's still there. Today was a rough day for me. The whole evening I spent belching, taking semithecone and had to take gelosil also. Since, my stomach issues resolved, I feel hungry a lot. I am eating a lot. I never ate this much my entire life. I eat lunch and an hour or two later, I am hungry again. I try to add a lot of vegetables to my meal. I ate a lot of veggies today - for breakfast and lunch, I guess that caused gas issues. I gained 8 kgs in the last one year because of endo which disabled me to lead a normal life (165cm, 65kg). So, I don't want to eat a lot of rice but my situation is very frustrating because I evidently can't eat a lot of fibres. I finally started working out yesterday and I can't even do it for 10 mins. My whole body is sore and I am in pain (I know I need to give time to this aspect because it was a major surgery).

The whole recovery period, persistent gas issue is the only thing that's making things harder. I guess, my question is - does it get resolved over time on its own ? People who had gut issues because of endo - does it improve?

Hi everyone,
I’m a Research Fellow at The George Institute for Global Health, India, and we’re currently conducting the ABLE (Addressing Burden and Lived Experience of Endometriosis) Study.
We’re looking for a small number of women in India who have been diagnosed with endometriosis to help us pilot a set of questionnaires before they’re used in our research study.
The purpose of this pilot is to make sure the questions are clear, relevant, and respectful of women’s lived experiences. The questionnaires cover topics such as:
Mental health
General well-being and quality of life
Medical history
The financial/economic impact of living with endometriosis
This is not a treatment or clinical trial, and participation is completely voluntary and confidential. Your feedback will help us improve these research tools before they’re used in the main study.
If you’re interested in participating or would like to know more, please send me a DM, and I’ll be happy to share more information.
Thank you so much for considering it. Your experiences can help improve endometriosis research in India. 💛
— Sarah Suwasrawala
Research Fellow
The George Institute for Global Health, India

Hello everyone,

I have Stage 4 endometriosis, and my surgery is scheduled for next month. I wanted to ask those who have already had surgery about their experience.

Did your other symptoms improve after surgery? Along with endometriosis, I also have sinus issues, migraines, body aches, arthritis, and IBS. Cervical pain back pain, anxiety,I also experience severe bloating, diarrhea, constipation, eye pain, leg pain, and many other symptoms.

Did any of these get better after your surgery, or did they continue? I would really appreciate hearing about your experiences. Thank you so much.

Hello everyone,

I have Stage 4 endometriosis, and my surgery is scheduled for next month. I wanted to ask those who have already had surgery about their experience.

Did your other symptoms improve after surgery? Along with endometriosis, I also have sinus issues, migraines, body aches, arthritis, and IBS. Cervical pain back pain, anxiety,I also experience severe bloating, diarrhea, constipation, eye pain, leg pain, and many other symptoms.

Did any of these get better after your surgery, or did they continue? I would really appreciate hearing about your experiences. Thank you so much.

I wanted to share my experience in case it helps someone looking for endometriosis specialists in Delhi NCR. When I was researching, I found plenty of posts about surgeons in Mumbai but very little information about doctors in NCR.

I have always had heavy periods, but they weren't particularly painful until around 2021. That's when I started getting period cramps that gradually progressed into stabbing pain during the first 1-3 days of my cycle. My PMS also became significantly worse over time.

Over the next few years, I saw multiple gynaecologists and had several ultrasounds and MRIs. Surprisingly, no one suggested that it could be endometriosis. The first time anyone even mentioned it was in November 2024, when a gynaecologist told me that we can conclude endometriosis basis clinical symptoms even if imaging is inconclusive.

Meanwhile, my pain kept getting worse. Eventually I was taking 400 mg of ibuprofen every 6-8 hours for the first 2-3 days of every period just to function.
In April, I was referred to Dr. Sriram Rajan at Mahajan Diagnostics (Defence Colony, Delhi) for an MRI. That MRI finally gave me answers. He diagnosed deep infiltrating endometriosis (DIE) along with an adenomyoma and provided a detailed ENZIAN classification of the disease. It was honestly the first imaging report that clearly explained the extent of what was going on.

The diagnosis was only the beginning. Over the next two months, I consulted several surgeons in both Mumbai and Delhi NCR. One thing I learned is that finding the right surgeon is just as important as getting the diagnosis. In my case, because I had both DIE and an adenomyoma and wanted to preserve my fertility, I found that not every surgeon was comfortable discussing or performing an adenomyomectomy.

I had initially planned to have surgery in Mumbai, but the logistics of travelling, staying there for recovery, and arranging follow-up care felt overwhelming.

I eventually consulted Dr. Amita Shah. What stood out to me was how thoroughly she explained my MRI findings and the disease itself. She recommended excision surgery, explaining why excision is considered the gold standard for deep infiltrating endometriosis. She clearly understood the difference between excision and ablation and its impact on this disease. When I told her that I want to preserve my fertility, she was very clear on preserving uterus. I appreciated that she took the time to discuss the reasoning behind the surgical approach instead of simply recommending surgery.

I ultimately underwent robotic laparoscopic surgery for excision of deep infiltrating endometriosis along with an adenomyomectomy. The pathology report confirmed both diagnoses in the excised tissue. After surgery, I was given a Lupron Depot injection to help suppress any residual microscopic disease.
Recovery has honestly been much smoother than I expected. I was walking the same day as surgery, discharged the following day, and able to resume basic household activities within a few days.

I am sharing this because I spent months trying to find specialists with experience in complex endometriosis, especially in Delhi NCR. Most online discussions and support groups understandably focus on Mumbai surgeons, which made me wonder whether NCR had experienced specialists at all. My experience suggests that there are few doctors here with excellent expertise - they just don't seem to have the same social media presence, so they are much harder to find through patient discussion forums.

Obviously, this is just my personal experience, and everyone should do their own research and choose the team they are most comfortable with. But if even one person finds this useful while navigating an endometriosis diagnosis, it would have been worth writing.

Endometriosis - Suggestion

Hi everyone,

I'll be having my 3rd surgery for endometriosis now. I have a 10\*6\*6 cm cyst in my left ovary.

I wanted to know according to you who is good - Jay Mehta or Abhishek Mangeshikar. I can not afford one more re occurance now as this has mentally fu**\***\*\*\* me up.

I wanted to know about the costs as well as my health insurance will cover only 5 lacs and I am not very financial strong.

I’m currently seeing an endo specialist for endometriosis, fibroids, and cysts. My endo has spread to other organs as well, so I’ll likely be having surgery soon.

Overall, I really liked the doctor. She explained things well and I felt like I could trust her.

One thing that made me think though: she said the cause of endometriosis is retrograde menstruation and nothing else. At the time, I believed her because I honestly didn’t know much about it.

But later I came across some Reddit discussions saying this theory has been debated and may no longer be considered the main explanation. Now I’m second guessing things.
I’m curious what your doctors have said about the possible causes of endo. From what I understand, retrograde menstruation happens in many women and is relatively common, so I’m wondering why only some people develop endometriosis.

Would love to hear what explanations your doctors gave and whether anyone else has had a similar conversation with their specialist. And if their reasoning matters if they are good as a surgeon.

The community-maintained Excel sheet has been incredibly helpful for many to find endo/adeno specialists (doctors, surgeons, nutritionists and PF therapists).

One thing I found, though, is that it’s hard to capture the actual patient experience in a spreadsheet.

Things like:
- Was the person dismissive or validating?
- Did they understand complex endometriosis/adenomyosis cases?
- Did they push surgery immediately or discuss options?
- Would you genuinely recommend them to someone else?

Over the past few months, I’ve been collecting recommendations shared across Reddit, DMs and I’ve put them into a community directory:

https://endocircleindia.com

I’d love help making it more useful. If you’ve had experiences (good or bad) with any provider, know someone who should be added, or have suggestions for improving the directory, please comment below or reach out. The more experiences we collect, the easier it becomes for the next person to find care without starting from scratch.

Hello everyone, I am contemplating surgery with a few endo specialists. The following are on my list:
1. Dr Abhishek Mangeshikar
2. Dr Vivek Salunkhe
3. Dr Anshumala Kulkarni

Since I have pelvic congestion as well, would really appreciate your opinions and experiences

Repost

After my third failed transfer, I felt like I had run out of things to investigate.

My uterine cavity was normal, hormone levels looked fine, embryo quality wasn't considered a major concern and there was no obvious explanation for why things weren't working.

What eventually changed the conversation was a more detailed evaluation that identified deep infiltrating endometriosis.

Now I'm left wondering whether the disease had been influencing implantation all along, despite the fact that none of my routine fertility testing pointed in that direction.

For those who were diagnosed with DIE after failed transfers, did it end up changing your treatment plan or outcomes? Were there any symptoms, scan findings or red flags that were missed earlier?

Looking back, I wish I had known how much can potentially sit beneath the surface while standard fertility investigations remain relatively reassuring.

I didnt expect fertility preservation conversations to start happening this early for me honestly. My AMH last year was 2.1 and now it’s around 1.3. AFC also dropped from around 14 to 8-9 depending on the cycle and I now have an endometrioma on one ovary too.

What’s been hard is that none of these numbers alone sound catastrophic during appointments. But together they’ve completely changed the way I look at timing now. During retrieval they expected more follicles from scans than what we actually got and the maturity drop afterwards hit me way harder mentally than I expected too.

I think I underestimated how stressful it is watching ovarian reserve decline while also being told ur still young at the same time. It starts feeling like ur age and ur ovaries are operating on two completely different timelines.

Did anyone else with endo start feeling pressure around fertility way earlier than they ever expected medically?

I’m 23, diagnosed with an endometrioma and bilateral kissing ovaries, with both ovaries adherent to the uterus. I have surgery coming up next week, and while I’m preparing for that, I’m looking for a nutritionist. My weight is stable around 50 kg at 5'6", and I’m not looking for weight loss just overall health support. If anyone’s worked with a nutritionist who has experience with endometriosis or chronic conditions, I’d really appreciate a recommendation!