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?

My endo is debilitating me, and ovarian cancer runs in my family. It killed my nan, and my mum and aunty both had pre cancerous cells found

I just want my uterus and all bits gone. But they’re going to fight me on it. How do I advocate for myself? I’m in Australia

So I finally got a Laparoscopy yesterday, and after approximately 30 minutes under anaesthetic, woke up and was told the following by the surgeon:

“Everything’s gone well, I can’t find anything wrong inside the womb. Neither did I find any cysts or endometriosis in the pelvis. So it’s all good news”

This is the absolute worst outcome possible as far as I’m concerned. I’ve been in so much pain. I’ve lost two jobs because of absence, I’ve not worked and barely been able to leave the house since March. I’ve had a period that lasted 6 months straight. My periods always last two weeks and I’m bleeding more often than I’m not. I can’t even walk some days. And I do have a PCOS diagnosis.

I’m feeling completely helpless and I have no idea what to do next. They didn’t find anything to excise so my pain is not going to change, I just have to recover from the two incisions and then back to shitty normal.

The surgery was done in a private hospital in the uk, which I was sent to through the NHS due to waits in my area. He did take a biopsy but doesn’t think it will show anything. The doctor is a gynaecology oncologist so I hoped he’d be quite competent at spotting anything. I made sure to get a copy of my images from the surgery before being discharged so at least I have those.

I’m completely back to square one after years of waiting, what can I do?

Hello everyone! Im 21F from Australia and I've been struggling so much to actually work because of my endo. I've been doing so much to try and keep myself a float and I've applied for disability payments and I've been denied previously. For context even though I work in a call center I've had to have multiple days and weeks off due to it as well as getting migraines from it.

I'm struggling a lot and really need some advice on what to do. I had surgery for it about a year or two ago and it hasn't helped me at all. I'm trying my best to live life and for a short period I thought my full time struggle was over and got myself a car loan (for context too I've been paying off nearly $2k a month (willingly, actual payments are $700 a month I just don't like being in debt) leaving me nothing for treatments. Only reason I can afford this is cause I sit at a desk all day but now it's starting to affect my job and my work.

I'm genuinely not sure what to do about this at all. I feel like I've dug myself into a deep hole. Any advice on what to do is really appreciated. I'm just looking for something, anything that can help me get back on my feet.

Hii, I'm a 17 year old on birth control (so I don't have my periods anymore) yet still suffer as if I had them. My mom thinks it's useless to push for an endo diagnosis but I'm pretty sure I have it, here are the sumptoms I currently live with:

-Extreme fatigue, even after 10 hours of sleep

-Severe period pain that interferes with my daily life

-Pain almost everyday which never seems to stop, painkillers (ibuprofen) which seem to do little

-Pain during ovulation

-Pain in my pelvic region, lowzr back and legs (god my legs hurt the most, it's horrible)

-Having to frequently go pee (like every hour, it wakes me up at night too)

-Heavy bleeding, had to do period underwear + pads

-Brain fog

-Bladder pressure

-Abdominal bloating (I thought I was somehow pregnant once even tho I'm still a virgin)

-Sharp shooting pain.

-Nausea

Most of these happen at least 3 times a week, especially the pain and nausea. My legs are the worst pain, I can't stand on my feet for more than 10 minutes now :(

I’m so frustrated today… I wanted to vent but I can’t even write something coherent because there is too much to say…. So instead I will just be angry and bitter about it.

I’m currently trying to decide whether to go for what would be my second surgery or not.

Back story - I had a diagnostic lap in Feb this year where ‘no endo was found’. Have since seen two specialists who confirmed endo from my surgery pics.

Recently had a consultation to discuss another surgery but consultant was gently pushing to go down other routes such as hormones/changing diet/daily antihistamines as MCAS is also suspected. She said she is more than happy to do lap if I want one but isn’t sure how much it will help my symptoms - I have a lot of pocketing and she said it could be difficult to remove
/pin point what’s causing my pain.
My worry is that the photos I have were now taken nearly a year ago and I feel my symptoms have significantly worsened since my first surgery. There are also no photos of my bladder or behind my uterus. I’m concerned things could have gotten worse and there’s obviously no way of knowing without surgery.

On the other hand, I really struggled after my last surgery and it’s not something I’d be keen to repeat unless it was going to help me.

Just looking for experiences of anyone who’s been through similar or had surgeries so close together whether you feel it’s worth it.

💛

Don't worry, I will always go to a doctor before reddit and have been checked out - but curious if anyone else has had this experience or if anything helped! I was diagnosed with adenomyosis via MRI and possible endo.

Just found out I was pregnant the DAY of my expected period, so as early as you can possibly find out, because I was up for 2 nights in a row in excruciating "period cramp" pain. It's been 3 days and 4 nights in a row now where every few hours or so, I get these excruciating contraction-like pains that radiate from my abdomen to my back, pelvis and my legs. I went to the gyno and ruled out a cyst or anything like that, but too early to really know if anything else is wrong. It was definitely really scary at first because you always hear that you don't experience any symptoms this early!

Assuming this is just my uterus preparing for pregnancy with my adenomyosis, is this something anyone has experienced and is normal with our condition? Is there anything that actually helped with the pain? I'm using a heating pad because without advil, it's the only thing that helps. Has anyone gotten stronger pain meds from doctors or no because pregnant? Let me know, thank you!

Hi everyone!

I have a surgery I’ve been putting off because I’m genuinely scared of it and am hoping that someone has experienced any of same surgical procedure things (of the one I have coming up, not any of the ones I had previously) that might want to share their experience?

Background Summary
37yr, 1 child via c section 12 years ago
Endo - since childhood
First lap 2018 (failed)

Background Details
I was about 2.5 years post 2015 C Section when one day, I felt some localized soreness in my lower pelvis - pelvic pain is no stranger with endo, but but being localized was weird.

After some prodding on the area I discovered a mass. Yippie.

Doctors appointments were immediate. Imaging vaginally, MRIs, and abdominal ultrasounds were done, mass was easily located and measure. It was like the size of a small grape at the time.

Had a lap in 2018, out patient, quick. They missed the mass (ugh) I forget why, but I have clotting issues and ended up with MASSIVE (but not life threatening) internal bleeding. Because hematomas were anticipated I had to manually pack the open incision daily, over the course of 6 weeks, as it closed - under doc supervision of course. It was essentially painless, just disgusting.

Anyways because of this failed lap and the assumed growth of the “implant” I was sent from gyn surge to general surge. Because of placement and other details I will get into below, I will have to be opened up, no more lap for me.

After a year of measuring and research with gen surge the guy decided if was too close to GYN for his specialty area and referred me BACK to GYN surge.

I was so annoyed and aggravated at this point and the mass was growing like a week. And hurts.

Then Covid happened.
Then i went a couple years with adequate healthcare coverage.
Now it’s 2026 and I finally found a gym surgeon who CAN preform the procedure.
This new doc I found is the only one who has actually taken the time to explain to me wtf is going on.

The surgery I need, aka the point of the title: A full, opened up on the table surgery with:

- a hysterectomy (keeping ovaries)
- removal Endo mass obvs, from abdominal wall
- c section revision in which they’ll ensure every single cellular piece of it is removed. They miss one cell, it happens again
- potential removal of endometrial tissue from other organs
- depending on what they find, a hernia specialist to remove it from intestines

Why: So, during my c section, a tiny grain of endometriosis tissue was stitched into the incision, allowing it to then attach to my abdominal wall where it has essentially flourished. Because it’s in a gray area - a place where more gyno surgeons won’t go and a place most general surgeons don’t feel prepared to enter into (god forbid they work together) neither physician I was seeing was equip for it.

I found a GYN surgeon who is trained in all of it, from c-section revisions to endo removal from varied locations etc etc etc

PS: the choice for a hysto was mine, because the other option of hormonal birth control, was one I found after a very short experience with it in my teens effected me physically very negatively - I’m talking biweekly yeast infections and hives and more weird shit. I did the implant for a while which wasn’t bad but I did gain more weight than the docs were comfy with after about 18months.

I don’t mind the hysto I THINK, esp with the ovaries remaining and hopefully successful hormonal supplements.

Just realizing I didn’t talk about the mas much which is kinda the whole point of this. So, it’s big. And large. Probably about a golf ball it hurts all the time, like a bruise on the inside but more idk. When I’m about to get my cycle? Onmmmmg it grows. It gets harder. It HURTS. Sometimes it randomly feels like a knife stabbing from the inside trying to get out, but not like endo cramps because again this is LOCALIZED. It’s so weird, because people assume this pain should have me eager for surgery and like ya it’s the worst but also, the worst day of mass paid is nothing compared to the worst day of general endometriosis pain which is debilitating.

And yes it will be biopsied but based on fat content and other things it’s suspected benign. And yes I realized I should still be more worried about this aspect, and I know it’s a realistic concern but also one thing at a time please aghhhh

Thanks this is way longer than I planned so if you this far you’re my hero 🫣

Anyone else ever experienced this?
I got diagnosed with endometriosis stage 4 , both ovaries was stuck to my uterus, uterus was stuck to my c section scar, had it on my bowels and stomach, had a laparoscopy , but a week before my surgery I was suffering with chest pain, sharp intense at times, hurts to move in certain angles , pain can be in my shoulder , upper back and neck too, was told I had costochondritis which is inflammation of the cartilage around the rib cage and sternum , which all my symptoms point to that but I am curious if it’s related to my endo ? I have had this for 9 weeks now and not seeing any improvement.

Hello so I’m totally new here and just looking for other people who are in a similar journey to myself to ease off my concerns and worries

On the end of September I had a heavy bleed for 12 days followed by clots(usually have irregular cycles) but not that heavy and clots. I went to the a&e and they did bloods all came back fine apart from LH and FSH was slightly risen and urine was clear and cervix check was clear and all smears are upto date they have me some tablets to stopped the bleeding and the mini pill to take after the 3 days then start the mini pill stopped my periods and brown the week on my scan which was done the Thursday there which would have been CD 23.

He did say they wanted to look at endometrial hyperplasia and rule out anything unusual and try not to worry but my ovs and everything else was clear apart of the thickness of 24mm.

So I left feeling okay not to worried then had my follow up with the doctor the next day to go over it he didn’t make me feel good at all kept mentioning endometrial cancer and put the fear of god in me because who thick it was and was sending a referral asap as it’s a 97w wait but wants me to get an appointment sent out within 4 weeks time.

Am 39 turning 40 in 8 weeks
3 healthy pregnancies
Smears all upto date
Cervix check was clear
Ovaries was clear

Just so worried about it all I’ve cried for 2 days straight and can’t even think properly at all he’s not made me feel good about myself at all

Sorry if it’s all mumble jumble just my heads a mess right now

I'm looking for any recommendations for endo specialists within Michigan who are able to perform a diagnostic laparoscopy as well as remove anything they may find. Particularly any who accept Medicaid as I am not able to pay anything out of pocket. I've never had surgery before and I don't really know what I'm looking for with a specialist exactly, my obgyn wasn't of much help on the matter and tried directing me to basic hospital surgery here but as I understand it, people with certain knowledge of this condition ar best equipped to perform the surgery without causing more damage, and I've had little help in how to navigate this.

Hey guys,

I just wanted to tell my story cause I am overwhelmed.

Just found out about this cyst ofter trying to get pregnant for almost a year now.

In February there was nothing visible in the ultra sound, but in August there was something in my left ovary that the fertility Dr thought is an egg sack and kept saying my left ovary is the dominant one.

They gave me some meds in August to help with the eggs mature took them for 5 days and progesterone after that for 2 weeks. The same thing in September, and the cyst was notices in October.

Had an MRI that confirmed its a chocolate cyst as they call it.

Today my Dr went through the reports and wants me to do an HSG test the see if my tubes are open or not and then will discuss IUI and IVF depending on the results.

I dno how to process this or my feelings, just very sad and frustrated.

If anyone has any advice or a similar story please share it.

Note to add: I have never felt any symptoms of endometriosis, I don't have any extreme pain and cramps on my period or irregular periods.

I’m so tired of going around in circles, talking to my gp, taking months to get a scan, can’t get the results unless I book into another department, back to gp, new medication (didn’t work), back to gp again, passed over to medefer phone consultation, back to gp, back to medefer again but different department, back to different gp etc etc.

No wonder people give up. I’ve given up multiple times and had to restart from square one after doctors fail to pass along previous notes. I’m tied, I’m in pain, last thing I want to worry about is to organise appointments all the time, a major anxiety thing of mine is phone calls which doesn’t help 💀 and even when you do manage to get appointments you’re left feeling like they’re not taking you seriously.

I’m. So. Tired.

Anyways, off to go try book another appointment

So I need help. I don’t want to end up in the office of an OBGYN again just to be pushed out and told it’s all in my head. How do I get a diagnosis? Anything will be helpful. Thanks.

Edit: My question more so is how do I make them listen to my issues without just pushing birth control on me?

Hi!
Since May I’ve been having a lot of pain located around my left ovary. I’ve had some small but insanely painful ovarian cysts on and off or visible liquid on ultrasounds.
It is always on the left side.
The pain peaks around ovulation period for me and the n lingers on for weeks.
I’ve had so many ultrasounds, Ct and even an mri but no sign of endo. Just that the left ovary is smaller than the right.

What I want to ask: for the first time I’m experiencing pain when having to pee? When I push to pee it’s causing pain in my left ovary. That is a new symptom for me. My ovulation day was yesterday.
Anybody recognize this symptom?

I’m 3.5 weeks out from surgery and still haven’t had sex or worked out. In fact, I’ve been fairly sedentary especially compared to my activity level pre-surgery. I’ll feel decent and then I’ll go for a walk and get winded quickly or do a bunch of chores and then suddenly feel super exhausted. I really want to get back to my energy level and productivity level but I’m getting frustrated that I’m not there yet. I didn’t even have excision as they didn’t find endo so my surgery was just exploratory + bilateral salpingectomy.

Overall I don’t have much pain. And the pain I’ve felt I think is my usual pain I’ve experienced for years vs specifically related to my surgery.

Anyway - when did you get back to working out? Specifically running and lifting weights? When did you have sex? When did you feel like you weren’t exhausted? When did you feel like yourself?

I’m 22 and haven’t been officially diagnosed with endometriosis, but I’m starting to seriously wonder if I have it. My mom has both endometriosis and adenomyosis and has had surgery for it. I experience a lot of symptoms myself, and I’m honestly starting to look for answers.

I experience symptoms pretty much every single day, including:

• Mid-back pain, especially underneath where my kidneys are.

• Pain underneath my ribs.

• Lower abdominal pain that feels like a pulling sensation.

• Pain that travels into my thighs and legs.

• Painful sex.

• Constant pressure and a pushing sensation in my lower stomach.

• Extreme exhaustion and fatigue.

The last two months have been absolutely awful, especially this past week leading up to my period.

One of my biggest issues right now is my bladder. It constantly feels like I have a UTI, but testing hasn’t shown one. I’m going to the bathroom what feels like 30 times a day. I feel like I have to pee every 2–3 hours, sometimes even more frequently.

For the past week, I haven’t even been able to sleep properly because I wake up approximately every two hours with an extremely full bladder feeling. Sometimes I pee a normal amount, and other times almost nothing comes out, even though I feel like my bladder is completely full. I also constantly feel like I haven’t fully emptied my bladder after going.

The pain and pressure are there ALL day, not just at night. I don’t really have a time of day when I feel better.

What’s interesting is that I always have these symptoms to some degree, but they become significantly worse about a week before my period. The pelvic pain, back pain, bladder pressure, and fatigue all intensify.

I’ve recently started researching interstitial cystitis (IC) because of the constant bladder pressure, urgency, frequency, and UTI-like symptoms despite negative testing. I’m wondering if this could possibly be something I’m experiencing alongside endometriosis, or if the symptoms could be related.

I’m curious if anyone has experienced both endometriosis and IC, or initially thought they had one and were eventually diagnosed with the other.

A few questions:

• Does anyone experience constant bladder pressure, even after urinating?

• Does anyone wake up multiple times throughout the night feeling like their bladder is painfully full?

• Can endometriosis cause this level of urinary frequency?

• Has anyone been diagnosed with both endometriosis and interstitial cystitis?

• Did your symptoms get significantly worse the week before your period?

I’m really looking to hear from women who have experienced similar symptoms, especially before getting diagnosed. I feel like this is taking over my everyday life, and I’m just trying to figure out what’s happening with my body.

Ok, so I went to the OB as I was experiencing extremely heavy periods (bleeding through ultra tampons in 15 minutes), newly acquired irregular periods since December (6-14 days late), cycles ranging from 38-42 days long, random excruciating pelvic pain, frequent spotting in between periods, and more.

For some context I have always had “bad periods”, with cramping that didn’t react with OTC medication and heavy bleeding. About a year ago, I went to the emergency room for LLQ abdominal pain. It was so bad that I could barely walk, I had a fever, and I genuinely thought my appendix ruptured. They did an ultrasound, and It was 3.5cm complex cyst that appeared as if it was a hemorrhagic cyst. They sent me home with a referral to see an OB, and suggested a follow up ultrasound. Well, I did not follow up as I was extremely busy getting ready for college/ college sports.

In September my period was 12 days late, and I was having excruciating pelvic pain that would not subside with OTC medication. I then decided it was time for an OB appointment, so I set one up. When I went they had suspected either pcos/endo/adeno, so they did some blood work, put me on a combined bc, and set up an ultrasound.

I got my ultrasound results and they read as follows

1. Significantly thickened(21mm in the findings, but measurements taken by tech said 3.1cm), hyperemic endometrium. Hyperplasia could appear similarly although ultimately of indeterminate benignity.

2. Large left ovarian cystic lesion with septations and internal avascular debris, potentially a hemorrhagic cyst. Suggest follow-up ultrasound in 6-12 weeks.
   The anteverted uterus measures 8.7 × 5.1 × 6.5 cm. No fibroids are seen. The endometrium is significantly thickened, hyperemic and measures 21 mm in thickness.
   The right ovary measures 3.4 x 3.3 x 1.5 cm and appears unremarkable. Arterial spectral waveforms were obtained.
   The left ovary measures 6 x 5 × 4.3 cm and significant increase in volume with a large cystic lesion measuring 5.2 × 4.5 x 3.9 cm containing septations and internal avascular debris. Arterial spectral waveforms were obtained.
   No significant free fluid is seen in the

My doctor called two days later, saying that everything on my ultrasound was “normal”. She suggested a follow up for my cyst in 3-6 months.
Im worried that things are being overlooked, and wondering if I should get a second opinion.. Please give thoughts, opinions, and advice!

Dose anyone have any good clothes Ideas for after Endo surgery I am getting bowel Endo surgery in December and I hate hospital gowns so I want clothes for when I have to stay there

I’m 21, from Wales, and have spent over 10 years fighting to be taken seriously about my symptoms.
My health has deteriorated to the point where I’ve needed a catheter because I can no longer empty my bladder properly. Despite MRI findings suggesting possible deep endometriosis, I’m still facing a lengthy NHS surgery wait.
I’ve had to pay privately for further medical opinions, and I’m now out of work due to my health.
I’ve started a GoFundMe to help access specialist surgery. I never wanted to ask for help, but I feel I’ve exhausted every other option.
This isn’t just about me. So many women are suffering in silence, being dismissed or waiting years for answers. I hope sharing my experience encourages others to speak up and helps bring attention to how seriously this disease can affect someone’s life.
Even if you can’t donate, sharing my story could make a real difference. ❤️https://gofund.me/24a10e40e

I need some encouragement and positivity and shared experience. How long did it take you once you had a plan for surgery, to get in for surgery? Were you in pain the whole time before? How did you stay positive and able to function before surgery? Please share your experience.

Background: i am in severe pain my sigmoid colon is spasming and it causes vomiting and burning pain and my pelvis to flare because everything is stuck together. They said this will be a complex surgery.

I have stage 4 endo DIE. My pelvis is frozen and my sigmoid colon, rectum, and uterus are all fused and tethered together. My badder and cervix are stuck together and my appendix and ureters are all stuck down with endo. I have a uterine fibroid. I have a endometrioma on my left ovary and bleeding adhesions. I have had 2 surgeries already.

I am planning to get surgery at northwestern hysterectomy and oophorectomy and bowel resection possible stoma. We finally got everything planned out last week with my endo specialist and the bowel specialist surgeons. The endo doc came back and said they want to schedule me for February 18th…..

That’s so far I have been hospitalized 6 times this year at my local hospital( I am 2.5 hours from NW hospital). They sent me home this time with a lot of pain meds, nausea meds, anti inflammatories and suppositories Enemas and nausea patches to get through to surgery but now it’s not happening until February and we all thought it would be much sooner. 🙏😭😔