I’m currently looking at all the stuff I juggle from working to parenting to aging parents. I do it through the pain and exhaustion. I’m often able to keep a smile. Inside though I feel like I’m dying and I’m so tired. My body feels like it’s been put through a blender. I look at other people who are able bodied and can’t function with a cold or lack of sleep. Not to discredit their plight but it makes me think “if I can do all this feeling how I feel, then I would be unstoppable if I was able to fully function”

After years of chronic pelvic pain but also in the last year I've been having change in bowel patterns, dizziness and chronic fatigue. Finally got a referral to a gynecologist after years of being dismissed. My cardiologist was the only one who kept asking me. Transvaginal US showed adenomyosis. I am lucky i see multiple specialists due to chronic health issues so i had other doctors i could speak to. I was on visanne for 2 months but had to stop due to adverse reactions.

I finally had a nervous breakdown at my doctor's office as I am currently off work, eating very little and feeling very weak. Was screaming blood murder because I was in so much pain and felt helpless. Gynecologist finally approved me surgery and told me there is a 6 month wait. The following week I got a call saying there was a cancelation and asked if I wanted it. I said yes so next month I am getting a total hysterectomy, bilateral salpingectomy and appendectomy and excision of endometriosis

I became a nurse to advocate for people who look like me (visible minority, mental health issues, neurodivergent). I have seen a lot as a nurse but I also live in the world of being a patient. I grew up in the hospital.

I am halfway through my bachelor's and I am planning on doing my Masters in Nursing with focus on gynecology and gender studies.

With all this free time on my hands I want to use some of my knowledge and try to help others who are suffering in silence. Please reach out to me, DM with your situation and I will do my best to listen and help🙂

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 guys, so this is the second time I've tried to have the Mirena coil fitted and been in so much pain we've had to stop. First time was about 6 years ago, second was today. I got my Adeno diagnosis a few months ago (also presumed Endo), and heard how effective the coil can be, so thought I'd try again.

I only got to the clamping stage, and the pain was so horrific, we had to stop. The women trying to fit it were absolute angels, they tried to use numbing spray but honestly it did nothing. As soon as the clamp went on it was so instant. She said most women don't even feel the clamp but some women have an extremely sensitive cervix (lucky me).

Next time they're going to try a cervical block. Has anyone has experience of this? Is it useful? I also wondered whether the cervical sensitivity might be linked to Adenomyosis/Endometriosis?

Feeling frustrated, wish things were just straight forward for once!

Had adenomyosis show up on a scan 12 months ago when being tested for endometrial cancer, because cancer wasn’t found was discharged from gynae and told to get a coil. As part of the cancer investigation I had a hysteroscopy, and found that really painful and traumatic. I opted to decline the coil because I couldn’t face another procedure. I had to self refer back into gynae and wait 40+ weeks to be seen. The consultant took my history and gave an internal exam, which was quite painful. Offered medication, ablation or hysterectomy. Have gone for hysterectomy, as a ‘cure’. Could anyone give me their experiences of hysterectomy on NHS, and has it improved your life?

I saw a new fertility specialist this week to get a second opinion on our fertility treatment. He mentioned that my adenomyosis could be caused by the number of D&C procedures I have had (4). Has anyone heard this before? It's the first time someone has spoken to me about a cause and about how it might impact fertility.

Hello, im 8 weeks into my Mirena IUD, I got it inserted during stage 1 endo excision surgery 😊

I’m on my second period with it, it’s much lighter than without the IUD of course, but still some cramps. Hoping my bleeding stops altogether as the months go on 😊

During my surgery the surgeon said my uterus looked pretty normal. But based on symptoms I was diagnosed with adeno.

I’m very happy with my Mirena so far as I don’t hav severe pre menstrual cramps so far.

Anyone have success long term with Mirena?

I posted this in hysterectomy but thought I’d also try my luck here.

Hi all. Looking for advice, also looking for a supportive community to hear me weep.

I’m a 25 year old female in the Massachusetts area who has been complaining about heavy menstrual pain since I was around 14. Vomiting, trouble walking, etc. At around 20 I’ve since had multiple emergency room visits to the point where I’ve just stopped going. When I reach out for help from my care team, I get the run around.

My first gyno was a male doctor (not saying all male doctors are bad) who stated multiple times that me and my girl friends over exaggerate out pain, and since I was throwing up I probably had the stomach bug and felt dramatic about it.

My PCP (whom I love) works out of an office that doesn’t care when I call and tells me to go to the emergency room. I don’t want another emergency room visit, respectfully! Once after my last emergency room visit I called and told them I went and would like to talk about it during my next routine physical and to put the note forward to my doctor. I received a call back stating I’m not allowed to talk about my issues because “it wouldn’t be mindful of the time spent for other patients who wait”. I was on birth control, but I would get so nauseous all day and sensitive to smell at my nursing home job I would be dry heaving at work. And it didn’t go away after a few months. I told someone at my next visit for follow up and they just shrugged and took my off of it.

I went to a new gyno who put me in for imaging and there was notes on adenmyosis and they put me in for a lower dose of birth control. However my insurance wanted me to pay it myself ($400). I called and told my gyno, and they never got back to me and never switched my script. I called mad as a hornet at a certain point because this constant complaining of pain has started when I was so young, now I’m 25 and about to have to lose/change insurance at 26. They told me since I “failed to get the birth control” they can’t help me. I told them I tried and called but they coincidentally have no record of that. I asked about my imaging I never received a call for and they said it was “Unimpressive due to ovaries being intact”. (If the imaging was truly unimpressive, there wouldn’t be a whole paragraph detailing what’s going on with my uterine wall! Usually unimpressive scans measure everything and that’s about it) Then they told me they are shutting their offices down for good, and don’t know what else they can do for me. Despite my old gyno and my current gyno working out of the same office, because a new corporation bought them out during that switch I’m a “new patient” and don’t take priority.

What do I do? I feel like I’m being an awful karen on the phone at this point. I couldn’t help but cry on the phone to the desk lady at my PCPs place. It’s hard because I feel like I’m nice and quiet and I get nothing, but when I’m firm I get gaslit and refused.

I had an ultrasound today to assess my lining during a modified natural cycle as I have only ever done medicated cycles and am looking to try a modified natural. We are waiting a cycle to do biopsies due to RPL so my LH peak was yesterday and my OB said it looks like I already ovulated.

I have had at least 15-20 ultrasounds done all by fertility doctors, some with her as well, either as baselines, during IVF stimulation, and multiple medicated cycles and my lining has always been trilaminar and uterus appeared even.

During today’s visit my lining looked thick enough and trilaminer but my uterine walls looked uneven. My OB said it is usually a sign of adeno but I have always had very even uterine walls in the past so we aren’t sure why they are uneven now.

Has anyone adeno presented itself like this?

I wanted to make a thread sharing my experience post UAE because I don’t see the procedure discussed much in this forum. I was diagnosed with adenomyosis earlier this year and researched treatment options and was initially really discouraged because the main treatment options I read about were an IUD and a hysterectomy, both of which didn’t sound like great options for me. Then I read about Uterine Artery Embolization, and it seemed like a great middle ground and without a lot of downside in that the procedure isn’t very invasive and the recovery is quick. I asked my gynecologist about it and she told me that it wasn’t used to treat adenomyosis, but I requested a referral to the specialist to confirm. The specialist confirmed that it very much is used to treat adenomyosis and got me scheduled. The procedure itself was quick and I was completely numb, but I was in decent amount of pain for about 2 days post procedure, and low to moderate pain for another 3-5 days. By a week out, I felt totally normal. Periods post-UAE can be erratic and it takes a while for the results to kick in but I just had my third period post UAE, and I am absolutely stunned to report that I had zero pain. I did not take a single pain medication nor did I bleed through ultra tampons on the hour. I didn’t feel like I had a fever, I didn’t feel like I needed to lie down for three days straight. I’m actually stunned by the result and wanted to share here in case it encourages anyone else to explore it as a treatment option.

I switched it Slynd last week after Nikki (generic Yaz) gave me one of the worse migraines of my life.

For the last couple of days I CANNOT sleep. It is 2:30am and my mind will not shut off. I had to call out of work yesterday because I got an hour of sleep the night before.

Google told me it’s not a common side effect, but I’ve seen it mentioned in forums here and here. Anyone else deal with severe insomnia since taking Slynd? I haven’t lasted a week on the pill and I’m calling it quits. This is intolerable.

I have been having periods with increasing pain and bleeding over the last few years. Used to be 1-2 a year were “bad” and now it is almost all of them. Finally decided to go to the doctor. I’m 30 and trying to finish my PhD (probably need 12-16 months). My husband is military and has 5 years left before retirement. He is gone for weeks to months at a time and we agreed that kids were a post PhD-post deployment goal (I honestly wasn’t even sure I wanted them until last year). I was hoping to start in about 3 years when he is winding down and I have an established job. I thought I had so much time.

Now I’m very worried I have no time and I’m going to be forced to start having kids and parent as a married single parent (I know military spouses do it all the time but we really didn’t want that).

I had a pelvic US that showed “mild heterogeneity” that is “consistent with Adenomyosis” and I also might have PCOS. I am getting a endometrial biopsy in a month and then follow up with my provider at the end of August. I know it says mild but with my increasing symptoms, I’m worried it is going to get worse and worse.

I’m scared and I feel so alone. My husband is deployed and I don’t want to burden him with this because, well his job is stressful enough. I’m in a completely different state and time zone from my whole family and this whole thing is with a brand new doctor that I have met one time.

I am looking for advice on what to ask at my appointment next month. Should I be asking for additional testing/scans? Medications? I haven’t been on birth control in a decade because it wrecked my mental health so I am incredibly anxious to take again. Any advice or kind words are so greatly appreciated ❤️

Hi!

Currently on day 5 of stims, egg retrieval is tentatively next week. I’m so crampy - it feels like my period pains because of all this estrogen and prostaglandins. Did any of you experience this? My clinic told me Tylenol or Motrin is fine for pain thank god.

I was on birth control from day 3 of my last cycle and continuously bled for 4 weeks until I had a hysteroscopy, stopped birth control, then had my period. Miserable 🫠🫠🫠

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Hi everyone,

I'm 29 and currently TTC baby #2. I have a previous live birth and have also had previous miscarriages. I'm trying to understand what my MRI findings actually mean for fertility, particularly the junctional zone measurement.

MRI findings:

Anteverted uterus

Endometrium 8.6 mm

Junctional zone measures up to 17.3 mm

Radiologist's conclusion: Adenomyosis

Both ovaries unremarkable

No fibroids mentioned

No pelvic masses mentioned

Ultrasound findings (prior to MRI):

Moderate diffuse adenomyosis

Bulky uterus

Fan-shaped shadowing

Small myometrial cysts

Normal endometrial cavity (7 mm, triple-line)

Normal ovaries

No ultrasound evidence of endometriosis

Previous history:

Age 29

Previous successful natural pregnancy/live birth

Previous recurrent miscarriages

Laparoscopy with dye test in 2021 showed bilateral tubal spill and no endometriosis

Ovulating normally on monitoring scans

BMI around 35 (previously \\\~43 and have lost a significant amount of weight)

HSG planned

My specialist has recommended progesterone support when trying to conceive.

My biggest concern is the 17.3 mm junctional zone. Most of what I've read suggests that >12 mm supports the diagnosis of adenomyosis, and thicker junctional zones may be associated with lower implantation and live birth rates, but most of the studies seem to be in IVF patients rather than women trying naturally.

I'm trying to understand:

Has anyone conceived naturally with a junctional zone this thick?

Did anyone have recurrent miscarriage with adenomyosis but go on to have a successful pregnancy?

Did progesterone seem to help?

Did anyone's specialist comment on how much a JZ around 17 mm actually affects fertility?

I know nobody can predict individual outcomes, but I'd really appreciate hearing from anyone with similar MRI findings, especially if you've gone on to have a successful pregnancy.

Thanks in advance ❤️

I’ve been suspicious for several months that my pelvic pain for years has actually been adenomyosis, it only became super obvious after I was put on Eliquis for a DVT in January. It’s been horrendous to say the least and progressively getting worse each cycle.

My gyno sucks (shopping for a new one) and dismissed my concerns after a “normal” first US. I begged for a MRI, they refused. My primary has been extremely concerned with the blood loss and pain level, so she ordered a second ultrasound after I told her there was a slot available on Day 6 of my cycle and thought it could potentially show more.

I was correct - enlarged diffusely heterogenous uterus and abnormally thickened cervix. Primary called my obgyn out and they reluctantly gave the order. Since I can’t trust what the gyno says, has anyone ever been advised of particular cycle days to try and have the MRI done? Would it be right after my period like with US? Or does it not matter with advanced imaging. Appreciate any advise.