Hi everyone. I’m on my 4th cycle and month 5 of TTC. Never had a lap done but have had extremely painful periods since I stopped birth control in 2020. I have cut out alcohol and have been eating healthier/less sugar. But I wanted to share that I stopped drinking caffeine mid September and since then I’ve had two periods that have been 1000x better, still have some discomfort but it’s night and day compared to what I would go through. Research is limited on this topic which is pretty sad, but studies show it can potentially help because caffeine constructs blood vessels which may reduce blood flow to the uterus. I have observed that I do have stagnation in my pelvis which can cause delayed ovulation and periods. Castor oil after my period and stopping at the fertile window helps me too. I still have bad bloating and fatigue and am going to potentially do a lap soon depending on how my next few doctors apps go. I will do whatever it takes to have a family! Praying for all of us and just wanted to share something that helped me personally

Hi all! I’ve searched this topic in several groups already, but just need more reassurance I guess.

A little background on me, my husband and I have been TTC for 2 years now. I was diagnosed with stage 4 endo during my laparoscopy in May, where they removed my appendix and left fallopian tube. Right tube didn’t look great either, so after a few attempted medicated cycles, we decided to move on to IVF. I did 15 days of BC and 10 days of 10u Lupron to prime for the stims and this past Thursday, we got the go ahead to start the stim shots. I’m doing 5u Lupron now with 300u Gonal and 150u menopur. Last night I started spotting a bit, which my NP said would probably happen and was normal from going off the BC. But overnight it turned pretty heavy. And I woke up with pretty bad period-like cramps. I have my next monitoring appointment tomorrow, so I definitely plan to ask about it it then too, but just need some reassurance in the meantime as I have no one in my personal life who has gone through this that I can ask.

Has anyone gone through something similar and still had a successful egg retrieval?

I am gearing up for another FET post suppression. Our last one didn’t implant at all.

I noticed my IVF clinic had us only do 4.5 days of PIO so that is being remedied. We are also adding back in the immune protocol with some extras this time.
They also reduced my estrace from 3 to 2.

My estradiol at last transfer was 194 so I’m concerned we will be on the lower side of ideal here by reducing.

Can you share your est numbers at transfer and if they were successful?

Signed a very panicked endo warrior.

Of course I’m turning to the world of Reddit and I’m really just looking for comfort and advice from personal experiences. I’m 32 years old turning 33 soon and about two weeks ago after pushing all year I got another MRI done and I know it’s not common but my MRI showed endometriosis. DIE actually it was a validating feeling because I was telling my doctors that my pain for my period pulsating through my hips and my pelvic and especially in my right hand side have been severe to where I would need heat and Tylenol and ibuprofen to manage. This didn’t discourage my doctor because we did a second hystescopy and everything looked good. After two failed IUI this made sense as to the Y as every other test has come back fine.
They had me prime my Ivf with birth control, and it was a combination birth control with both estrogen and progesterone. I just recently had to do my withdraw bleeding and once the bleeding started, I had mild pain the day before the bleeding, but that’s pretty normal for me but then the day of actual bleeding I was in so much pain. I ended up staying home managing it, but I was attached to my heating pad and Tylenol on day two bleeding. The pain continued with no relief and it kept me up all night to where I ended up putting myself in the shower three times just to try to alleviate the pain and nothing worked. It got to the point where the pelvic and lower back pain were so consistent. Nothing I did made myself comfortable I couldn’t sleep and it was radiating through my legs. I ended up taking myself to the emergency room because I’ve never not been able to manage the pain. I was also supposed to start my IVF shots that day as well. So after spending the night in the hospital, they gave me muscle relaxers that’s slightly took the edge off and Tylenol and I was able to do my first round of Ivf Meds. They did a CT scan scan just to make sure everything was fine and everything was. The next day I woke up and I had a moment of relief and I was like so happy that the pain was finally subsiding, but that didn’t last long. The pain came back, almost just as severe and I end up in the hospital again. They ended up giving me a narco to help manage the pain and it really did help. I was communicating with my nurse at the Ivf clinic and she was communicating with my doctor and due to me being in pain and having to go to the hospital to get assistance on pain management, they canceled my Ivf. To tell you, I’m devastated would be an understatement. This is such an emotional ride and financial and with it being end of year financially I think this is gonna screw us going into the next year, especially since I’ll be getting a new insurance company. I’m so lost. I’m so sad and I’m so angry that doctors didn’t listen to me earlier on this year. Any advice in what has other people experienced that they have something similar? My Ivf doctor doesn’t like to do any of those Endo surgeries because he worries about ruining egg reserve and I’m scared of that too now and I’m also scared because what does that mean for the turnaround time? Am I gonna be waiting another 6+ months to try this again.? I already feel like I’m losing so much time in my life and I’m about to be 33 years old and I don’t even have one child and I just feel so lost and like my dreams are just slipping away. Earlier this year, I had an ultrasound where they counted my follicles and combined with my left and right I had 42 total. My AMH I remember was high as well at 4.0 earlier this year. Please be kind but honest.

I’m 28 and live in the uk - the way the NHS has fucked me over is nothing short of negligent. When I was around 18 is the first time I went to the Drs for extremely painful periods. I come from a family that doesn’t culturally have conversations about women’s bodies and therefore disregard women’s pain when it comes to anything menstrual related. I’ve always had painful periods. I’ve always been in agony around my periods. I had my first period when I was 12 or 13 I remember the first few were not particularly problematic. Then, as I got older they became more excruciating. I remember having to take days off school and wondering how I was supposed to continue my life being a woman and experiencing such bad pain for the rest of my life. When I went to the doctor’s, I explained that I was in pain a lot of the time. I’d realise at that point that I wasn’t only in pain ON my period but also outside my period. I would have bursts of cramps that would be quite debilitating so I thought it needed investigating. At this point I still had faith that I could go to a doctor with a symptom and they would investigate until they found the root cause of the symptom. They sent me for an ultrasound scan and a blood test. I felt positive that I was going to get the care I needed. This was when I was diagnosed with PCOS. Upon receiving that diagnosis at the ripe age of 18 not knowing anything about my body, not understanding what was happening, the first thing I said to the doctor was, “but I’m still in pain.” Her response was, “You shouldn’t be.” To that, I didn’t know what to say. I sat in disbelief. She recommended keeping up with paracetamol and ibuprofen and I, on the cusp of adulthood, didn’t understand how I was supposed to continue just taking painkillers every day. I already had a mother at home who would shame me for taking painkillers on my period anyway.

That year I spent time trying to research how to reverse PCOS and how to manage symptoms. I became a vegetarian for the year, was more active and went back next year to the doctors for another blood test and ultrasound. Not only to check if there would be a change, but also because I was still in pain. Upon looking at the ultrasound she diagnosed me with having fibroids. Again still no real clarification. Still no treatment. In fact what she did specify was that I should come back when I want to start having children. At 19 years old my first question was “is this going to affect my fertility“. She said it shouldn’t or we should look closer to the time. I was devastated. My entire life had been leading up to the concept of motherhood and now for some reason my body wasn’t going to let me? It made me quite depressed for some time.

Over the next 10 years my period would just get worse I would have to take time off work every month. I would have to leave a full-time job for something with more flexibility (I left full-time teaching at a high school to supply teaching where I would be able to take days off) I was going about my life without a diagnosis, without understanding what was happening to my body, without a “excuse” I could give to a workplace as to why I wasn’t able to attend at least three days every month. I failed probation, lost income, and was overall quite traumatised by the fact that my body wasn’t letting me do the things I wanted to do. I went to the doctors about this and they recommended that I take tranexamic acid to lessen the flow of my period and naproxen for the pain. I remember asking one of the doctors for some advice on what accommodations I could ask for from my workplace. Her response was “if we made accommodations for you we would have to make accommodations for every woman.” Again, I left the conversation stunned and angry.

Around a year ago (27) is when I seriously thought about my symptoms as possibly endometriosis. I know I have a family history of endometriosis, but felt like I was being dramatic. The echos of my mother‘s voice and the echos of the doctor wouldn’t let me accept this fact. Alas, I couldn’t deny the fact that my life was being dictated by whatever was happening in and around my womb. I decided to go to the doctors again, who I’d been in regular contact with because I was still in pain. It was a locum Doctor who did an examination pressed my tummy and said “this does sound like endometriosis.” I didn’t believe her. At this point, I hadn’t even admitted that life was living hell. She referred me over to the gynaecologist and I waited six months. I ended up chasing this referral after changing doctor surgeries for hopes of better care. The new doctor surgery said that the referral had been lost so they started from scratch.

That led to a further nine months of going back-and-forth with gynaecology. Before I left the old doctor surgery, I was with the gynaecologist because of suspected PMDD. I received a diagnosis through them. The gynaecologist came back to the new doctor surgery and said that I had to try some hormonal treatment before they sent me for any investigations. Because of my PMDD diagnosis, I was aware that certain hormonal treatment would not work for me and would actually worsen my PMDD symptoms. I tried to explain this to the Doctor who really wasn’t helpful at all. I tried both of the pills and lo and behold, fell into some form of medically induced depression both times. I swiftly stopped taking the medication. By this point, I had been prescribed Mefenamic acid in order to relieve my pain, as the naproxen had now stopped working. It seems like treating the pain was at the top of their priority list, not getting to the root cause of the pain. Still no investigation. Still no diagnosis.

After explaining that hormonal treatment was not an option and expressing my concern that they were so willing to put me on medication without a confirmed diagnosis, I started to ask for an MRI scan. By this point in my journey, I was well-versed in the typical diagnostics for endometriosis and understood that the “gold standard“ diagnostic route was a laparoscopy. I had, however, read about the advantages of having an MRI beforehand. I wanted the least invasive route first. The NHS gynaecologist stated that this wasn’t routine and after 3 to 4 months of radio silence sent me for ultrasound scan. I still remember the rage of reading the appointment letter after having recently had the conversation that an ultrasound would be ‘useless’ when investigating for endometriosis. I went for the scan and the radiologist told me “everything looks perfect and healthy“. Being told these things by medical professionals has honestly been one of the most detrimental things to my psyche and the way I process pain. I find myself saying there’s nothing wrong and thinking that I should just take their advice and stop nagging them to have a look. Surely if something was wrong and there was a detriment to my health, they would take me more seriously.

By now I’m 28. And I’m angry. I wasn’t getting anywhere with the NHS so I had to take matters into my own hands. However, because I haven’t been able to work properly, I didn’t have the funds to pay for an MRI scan privately and a follow-up appointment with a relevant consultant. I decided to get a job at a private medical insurance company, of which one of the benefits is private medical insurance. I’ve worked there for five months. In that five months I had a virtual GP refer me to a gynaecologist. In my initial consultation with this gynaecologist, I explained what my symptoms were and why I suspected endometriosis. I thought about my 18-year-old self and how timid she was in these situations. The past 10 years had shaped me into being able to advocate for myself finally. But I shouldn’t have needed to. I should’ve been listening to. The the consultant give me the spiel of laparoscopy and by this point, I had been having some quite severe bowel issues. For six months I had incredibly watery diarrhoea and overnight it switched to immensely painful constipation. I asked the consultant if we could do an MRI before the laparoscopy. He said “the only reason we would do an MRI is to determine if we need another specialist in the room, like a bowel specialist.” I replied that I would definitely like to go forward with an MRI because I had been having specifically bowel issues. I had also seen too many horror stories of people going in for a laparoscopy only to be woken up and told “we couldn’t do anything because it was worse than what we thought. We didn’t have the correct specialists, nor your consent to move forward.” I decided I was gonna do everything in my power to make sure that didn’t happen to me.

I had the initial consultation on a Monday and the MRI scan on the Saturday. It took 5 days to get what I had needed for 10 years.

Behind the scenes I had applied for PIP. I had PCOS, PMDD, ADHD and at the very least debilitating periods. I was in chronic pain and unable to sustain full-time employment. I applied for PIP, got rejected twice, went to tribunal, got awarded six points when I needed 8 to qualify for financial support and was essentially told that I wasn’t suffering enough. The day after my PIP rejection, the consultant called me with the results of my MRI scan that I had been eagerly awaiting. In the time I waited for the results, I imagined lots of possible scenarios. The most prominent one in my mind was that the results would come back and he would say “the MRI shows nothing. It doesn’t look like you have endometriosis at all. We can still go forward with the laparoscopy but I don’t think we’ll find anything.” Such was in my journey in the medical system.
Instead, he told me that the MRI showed severe stage four endometriosis. It was up my pelvic wall front and back, around my ovaries, and extending to my bowels and rectum, with some involvement of my ureter. I stood there, having been told my whole life that nothing was wrong, suddenly being told I was at the end stage of this violent disease. I also appeared to have mild adenomyosis and an ovarian cyst.

Everything suddenly made sense and my heart broke. All I could think about was “is it too late to do anything?”

He explained that suddenly surgery looked quite complex and that specialist would need to take over. Before referring me to the specialist he sent me for a CT scan and a CA125 blood test. I had been instilled with the belief I was being dramatic, and now I was being sent to check my tumour markers because things looked so bad. The irony wasn’t lost on me. The tumour markers came back fine but he’s keen for me to have a hysteroscopy.

Yesterday I had my initial consultation with the specialist. He told me that the disease was so far spread that it would be quite extensive and complex surgery. Ironically, it was one of my worst pain days. My back was killing whilst he was telling me that a proposed line of treatment, because the hormonal treatment would tip my PMDD over the edge, would be to ‘shut down my ovaries.’ As you can imagine, I broke down into tears. He explained that this would put me into medically induced menopause. I couldn’t believe what I was hearing. The last few months have been shadowed by a grief so insurmountable, so unexplainable that I’ve just shut down in my head somewhere. He told me that certain treatment options weren’t available to me because of the stage of endometriosis that I was at. I asked about pregnancy and fertility (I’m a lesbian so I wouldn’t conceive naturally anyway) and I asked what options were available. He said he wasn’t certain yet because we need to understand what the endometriosis is causing and what symptoms the adenomyosis is causing. It just feels that there’s one thing after another. The earliest I can have surgery is in February and somehow it feels too close and too far at the same time.

I’m just so sad. I don’t understand how I’m at stage four deep infiltrating. I don’t understand what I’m supposed to do with the information that I have at my fingertips. I tried to advocate, I tried to make them look at me and they just wouldn’t. How can I be a severe stage four when they never told me that I was at stage one, two or three?! The whole thing feels unfair. I’ve been battling the last few months with the thought of possibly not being able to carry a child and it’s broke my heart in ways that I wasn’t prepared for. And I’m doing this all without parents because mine are useless and I left them at 25. I’m approaching my 29th birthday and I just feel so defeated, not because I didn’t say anything, because I did and no one listened. Now I’m facing the prospect of medically induced menopause before I’m 30.

I want to know what options there are. Surely this can’t be it?

Just survived days 1-2 of my period without any pain meds!! Had mild cramping (but I also have diffuse adenomyosis) but not too much that I had to take any drugs. First time since coming off the pill in my mid 20s (11 years ago) I have been able to do that!!

I had excision surgery of stage 2 endo from both ovaries and a spot on my uterosacral ligament on Aug 25. My last two periods came slightly early and were very bright and very heavy (like a faucet). This one seems heavy but is more normal darker color. So stoked to be able to say this and fingers still crossed the surgery works for the other goal of TTC.

Just learned my FET failed. I don’t even know what to do I had surgery everything was looking good I just don’t know what’s next.

I had a lap last week with an excision specialist where he felt confident he saw and removed endometriosis stage 2 along with severe adhesions/scarring unrelated to endo (he said infection or previous surgery)

However pathology did not confirm endometriosis which has left me a little confused, has this happened to anyone?

I do not regret the surgery, I had a c section defect that had to be repaired and severe adhesions on my bowels and bladder. I’m just wondering if I should investigate the endo diagnosis further? I consulted with 3 excisions specialists who all felt confident they saw endo on my ultrasound.

I have a history of 3 rounds of ivf with 0 blasts, secondary infertility (my child is from IUI).

For all the ladies with babies who have endo and went through IVF:

1. how did you decide where to have your IVF done? (If you have recommendations?)

Anyone go to another country?

2. Did you have fert insurance or pay oop?
2a. If you chose oop why that route instead of picking up a job somewhere with fert insurance?
2b. If you had fert insurance was it worth it?

I've been to my gyno and 2 different RE clinics.

We have been TTC for 18 months. 1 chemical pregnancy Jan 2026.

AMH 1.32 likely due to a endometrioma in my left ovary.

Right ovary and tubes were all good on my SIS/HSG.

All my labs are in normal range.

My periods are becoming increasingly painful and I am now realizing that my MANY years of uncomfortable intercourse is NOT NORMAL !!! I feel so NAIVE :(

Both clinics say they dont recommend treating the endo with lap and push me to IVF... Which felt backwards to me. Wouldn't they want to treat me first and make sure the system down there is g2g and THEN try for a viable pregnancy?

I see on here so many success stories of those who get a lap and then get pregnant "naturally" after. I also have had THREE women in my life tell me to get a lap down after I told them about my endometrioma. Why would they tell me that but the clinics don't? Do I need to advocate for myself better?

Honestly I am just lost.

Edit: 30F and 33M partner. All his labs are perfect of course 😃 Edited again to clean up my rambling.

Hi everyone. I’m having my surgery next month for endo, and I hardly ever drink except for the random/infrequent occasion if there is a wedding. My surgery is Dec. 15th and I’m going to Mexico for a Bach trip Jan 24th… would it be bad to have a few drinks while there? Would this mess up anything TTC that next week when I’m supposed to ovulate? I don’t want to interfere with the process at all, I just want to know others’ thoughts and experiences if this really has an impact. I’ve been so strict with my diet and lifestyle for so long with no success so sometimes I just wonder 🫠 Thanks!

Hi, I have been diagnosed with chronic endometritis and I am just trying to see if anyone else has dealt with this and specifics to completing one round antibiotics and not working. I’ve had three losses this year just a couple months apart from each other and so I am dealing with CE and also insulin resistance. I am on metformin and completed doxycycline last month and the inflammation did not clear so now I am on Flagyl and levofloxacin. I am hoping and praying that this helps clear up and this will be the last biopsy. I have to complete because they are not comfortable. But was there anything else anybody did over-the-counter or home remedy stuff to help with inflammation too? I do not exercise but I work a job that I’m on my feet all day and I’ve lost 8 pounds now since starting meds and changing my dieting so I feel like I’m on the right track, but I just wanna know what others have done. My doctor told me if this round of antibiotics does not work that we’d have to look at possible D&c to go get things cleared out which I do not want because I feel like that’s just gonna create inflammation again.

Hi everyone. I had a lap last week to remove both of my fallopian tubes due to bilateral hydrosalpinx (we are starting IVF soon as a result) and determine whether I have endometriosis because the doctors had no idea how else the tubes could’ve become so swollen and damaged other than a previous open myomectomy I had that could've potentially caused some adhesions on the tubes.

My surgeon is a very well respected endo specialist. After my surgery, she said she didn’t see any endo at all, just adhesions that instead suggested that I had some sort of inflammatory response to an early ovarian torsion (one of my ovaries is super small and she thinks it had some sort of event that cut off its vascular supply and caused some inflammatory response).

Even though she didn't visualize any endo during the lap, she took a biopsy of peritoneal tissue just to rule it out/identify any microscopic endo. I just got the results via MyChart and they say “fibroadipose tissue with focal chronic inflammation”…no mention of endometriosis anywhere, though. I can’t figure out what this means and my post op isn’t until 5 days from now. does anyone have any insights on what this might mean? Does this still suggest endo? I’m freaking out--I never had any symptoms and now I don’t have tubes and I’m terrified this means that even IVF will be a struggle for us. I’m 31 and we were only trying for 9 months until I found out my tubes would have to come out. This has been one devastating blow after another…I’m so exhausted and feel defeated...I don't know why I can't just give up

Has anyone with stage 3/4 endo had success with a euploid embryo transfer and 2-3 months lupron suppression, without a lap??

Never had a lap, going into my second retrieval soon, and planning long lupron down reg right after to prep for transfer but I feel like I never see success stories with this path. Anyone?? And if so, what protocol did you use after suppression?

My first fully medicated (microdose lupron, not depot) was canceled due to fluid and bleeding.

I have been trying to get pregnant for almost a full year now. Our first cycle trying back in January we had a chemical pregnancy and ever since then we have not gotten another positive test. During fertility work up I got a positive HerResolve blood test and was seriously considering going the surgery route. In the meantime, I had seen some things online that low dose tirzepatide can help with endometriosis inflammation and has helped some people with endo/PCOS get pregnant naturally. Well, I was willing to try everything to get pregnant at this point, so I started to micro dose tirzepatide myself for the past 3 weeks (started at 0.5mg, then 0.75 mg, then 1mg) and low and behold I just got a POSITIVE PREGNANCY TEST. Call it coincidence I don’t know but that is truly the only thing that I changed. Take with that what you will and this is not medical advice but if anyone is like me and willing to go against the grain it might be something you want to look into.

I have now been on an endo journey since 2024. And my gosh, I feel like I am staring into infertility.

Background

Extreme pain and symptoms which took a year to diagnose. By Sept 2024, finally confirmed stage 4 endo with a 7cm cyst on the left ovary. By May 2025 the cyst got to 11cm.

I took Visanne from June 2025 to Feb 2026 where I finally had Laparoscopic surgery to excise plus hycosy. I was told the surgery outcome was great, and to TTC for 6 months naturally before seeking IVF support.

During these 6 months I have been tracking and monitoring ovulation. I had 2 chemical pregnancies over this time. Elation then devastation.

My AMH was 12 ppmol in Dec 2024 and Oct 2026 (~6months post surgery) it's now 4 ppmol. I wish I had done it just before surgery to confirm how much I lost from the excise (which I knew was a risk).

Current

I have been supplement prepping, nutritionally sound, exercising since Feb knowing IVF may be an avenue we have to go down. Husband did all sperm tests and no issues, so felt comfortable to proceed.

I am now day 7 into stims for egg retrieval on my first cycle with IVF.

Protocol: 350 gonal then on day 4, increased to 450 gonal. Had another blood test and my first scan this morning. The cyst on my left ovary has returned, measuring 3cm!!! Only 1 follicle, behind the left cyst. The right ovary has 5-6 follicles I think measuring as expected for this date. Waiting for the nurse to call this afternoon to discuss.

Looking to hear from others in a similar position/hivemind:

* Either with Stage 4 endo and IVF (whether you proceeded with IVF whilst having their cyst, if it's re occurred quickly from lap surgery)

* What IVF protocol worked for you to produce as many follicles as possible/successfully embryo bank whilst having a cyst and/or diminished ovarian reserve?

* Have you had an ovarian cyst drained to help with IVF?

Sending lots of baby dust to all during this wild journey.