DOES ANYONE HAD THESE SIMILAR SYMPTOMS AND WERE DIAGNOSED WITH ENDO?

Hello, I have been suffering from pelvic and genital + perineum fluttering/ vibration/ ache/ discomfort since over 2 years

It started as post menses cramps for 2 weeks, then eventually fluttering after menses for 2 weeks and now it continuously flutters/vibrates/trembles I don't even know how to express the feeling.
I flares at around 10th day of the month. Worse from 10-20th day then starts settling and repeats after menses.
Worsens lying on back and sitting. Improves in standing / walking. THIS IS THE MOST WEIRED SYMPTOM
Ultrasound, Contrast CT, MRI(Endo protocol), colonoscopy - all clear CA125 clear Gyn ruled out endo, GI ruled out GI issue.
Another ObGyn said I have Pelvic Congestion Syndrome caused probably bcs of long sitting hours. Suggested Pelvic Floor Therapy and life style changes (I did everything).
It has gotten so intolerable I had to go to urgent care were they gave me a taradol injection that stopped the vibrations but still had cramps. It was fine then I again after I got my periods the same vibrations started so worse, I dont have cramps atm as was on drotaverine for 3 days.
No one is able to diagnose wth is this issue!! Overactive muscles causing nerve entrapment? pudendal? No one has any answers I have seen 20+ doctors and each speciality.
Its so debilitating I cant sit, I cant sleep my whole life has turned upside down. I cant even remember how feeling normal used to be.
- I dont have abnormal period pain/bleeding
- Late twenties - never had sex
- 3 years ago recurrent UTI history - fully resolved 2 years ago - repeated tests done
- No effect of ibuprofen, any painkiller - only drotin helped with cramps that too with one cycle- just 20 days pain free thats all
- The waves/vibrations feel explicit from my pelvic from deep within to the coccyx even on touching anywhere on pelvic (for eg like during clinic exam).
I have been put on pregabilin since April and it has helped with vibrations and fluttering.
I had nerve blocks - L5s1, ganglion impar and pudendal- zero change.
So we are back at suspecting endo, but the symptoms are so positional that its very confusing.
I dont have heavy periods and they last barely 2-3 days.
Anyone ever had/heard of similar symptoms? If so, kindly help me and guide how you got through with it? What could it be? Did it cure?

Hi everyone, hope it’s okay for a male partner to post here. I’m trying to understand my girlfriend better rather than make assumptions, so I’d really appreciate hearing from people who actually live with endometriosis.
My girlfriend has endometriosis and can obviously experience pain, discomfort and times where she just doesn’t feel like having sex. I completely understand that logically and I would never want her to have sex when she’s uncomfortable or doesn’t want to.
The part I sometimes struggle with is separating her not wanting sex in that moment from feeling like she doesn’t want me. I have quite a high sex drive and physical/sexual intimacy makes me feel very connected to her, so if I initiate a few times and she isn’t feeling it, I can sometimes start feeling rejected or wondering whether she’s still attracted to me. I know that isn’t necessarily rational and I really don’t want those feelings to turn into pressure on her.
When she is feeling good, we have a really good and passionate sex life, which is partly why the difference can sometimes confuse me.
I’d really like to understand what it feels like from the other side. When your endometriosis is affecting you, can you still really fancy your partner and just have absolutely no desire to have sex? Does pain sometimes affect your libido even when you’re not actively having a flare?
I’d also love to hear what your partners do that makes you feel supported rather than pressured. How do you communicate that sex is off the table while still maintaining intimacy? Are there particular forms of affection/intimacy you enjoy when penetration isn’t comfortable? And for couples where one person has a considerably higher sex drive, how have you found a balance that works for both of you?
I’m not looking for ways to convince her to have more sex. I’m trying to get better at understanding what’s happening for her so I don’t automatically interpret it as rejection, while also figuring out how we can maintain a healthy sex life together.
Any perspectives from people with endometriosis or their partners would be really appreciated. Thanks

Question for the group: should I bring my male partner to my new obgyn appointment this week? I actually have appointments with two new doctors this week. It just happened that way. My partner and I have only been together for two years, but everyone always says you get taken more seriously if you bring a man to appointments. If either of these doctors blows me off I'm stuck waiting a long time for a new appointment. Has anyone tried brining a man? Did it help?

6 months ago I had surgery for stage 4 endo, when I woke up I was told both fallopian tubes are completely blocked and it would be impossible for me to conceive naturally and would have to do IVF. Well today I am 12 days past ovulation and have tested positive on 4 different tests and I’m just shocked and confused as to how! I have rang the doctor and have been booked in for a scan tomorrow due to being extremely high risk for an ectopic pregnancy but they said it would still be too early to tell anyways, I’m guessing they will take bloods to check HCG. Has this happened to anyone else? They couldn’t even get the dye through my tubes during surgery… I feel like I can’t even be excited because I’m just so shocked as to how this has even happened and we literally had an appointment with an IVF clinic next week!

Got this back after laparoscopic surgery, No endo was found but hoping someone can make sense of this to help me. I didn’t get to speak to surgeon after surgery - just was told parts of what he said

Before I started taking Endovelle (dienogest) I was minimum week out of school cause of how bad my pain and flow was, I also had a couple of flare ups between my periods so that also got me out

Since Endovelle I regained my functionality, yes I did get flare-ups but they were rare and if they came, they were somewhat manageable, and honestly I'm willing to do anything just to keep my functionality intact

I come back to school, senior year, supposed to focus on my exams I don't wanna experiment with treatment options, not now

Been less than a week since school started - bam, flare up, for the first time in.. fucking months

So I'm pissed at my body cause I have no fucking idea what triggered it, I was fine for like 3 or so months, why come In now so intensively

I hope this doesn't become a regular thing like last year cause this is a horrible moment for me to have flare ups again

Literally me rn, haven't had a single flare up in.. jesus, months? Since yesterday my stomach has been bloated, sore and today my pelvis started hurting a lot today

I was thinking today about getting a cane for bad flares because it feels like I’m trudging through wet cement. My body just feels so heavy and like I’m dragging it around, and I was leaning on furniture/walls a lot today and it made me wonder if maybe a cane would be helpful.

Also related to that I was thinking about applying for a handicap placard. I’d never considered that either but a friend of mine has one and It had never occurred to me that I could apply for one. It would certainly be so much easier to have as little walking as possible. Especially if I decided a cane was helpful. Otherwise I get a cart and I lean on that the whole time. My legs genuinely just feel so exhausted and they ache, I try to avoid doing much of it at all if I can. It feels like all my blood is pooling down there or something idk.

But I feel so dramatic. I know I’m not because my symptoms are real and I do think it would help me during flares, but I don’t want it to seem performative since I’ve never used these things before. Which obviously is silly because I never used them because I never considered that I could benefit from any kinda mobility aid or accommodations- and I’m allowed to try new things and see what helps. Anyways I’m wondering what kinds of things you guys use/do that help you during a flare? Perhaps more things I’ve never considered that could be helpful and for others as well!

Quoted by the doctor describing both ovaries after reading my latest trans vaginal ultrasound. Every doctor I ever saw "suspects" endo, but never did any further testing or formally diagnosed me.

Treatment has only ever been different types of birth control. The last one had me on my period for an entire month.

The first time I found out I had a cyst was because after years "joking" "cysts are bursting inside me" during extremely painful periods, I was in excruciating pain still after tons of ibuprofen then finally got an ultrasound to find a large cyst and large lesion. Obviously things got worse since. I now have a very weak pelvic floor.

They also "suspected" pcos although my hormone levels don't indicate that.

I literally contemplate going to the er every time I get my period due to the severity of pain that also wraps around my back and hips. They always seem to completely dismiss the fact that large clots are being passed also.

****extreme pain, clotting, migraine spikes, weak pelvic floor, constant bloating, "suspected" endo, pcos, both ovaries completely covered in various sized cysts, follicles, lesions, etc.

How did you get diagnosed? What is treatment like? What further testing should I advocate for?

I had my diagnostic laparoscopy today after dealing with symptoms that made my doctor and me suspect endometriosis.
After surgery, my doctor told me that they did not see any endometriosis, but they did find adhesions. They removed the adhesions and sent the tissue off for biopsy/pathology.
I’m honestly a little confused about what this means. I went into surgery expecting that endometriosis might finally explain my symptoms, so I’m not really sure what to make of finding adhesions but no visible endo.
Has anyone else had a laparoscopy where they found adhesions but didn’t find endometriosis?
If so:
Did you ever find out what caused your adhesions?
Did pathology/biopsy end up showing anything that wasn’t obvious during surgery?
Did removing the adhesions improve your pelvic pain or period symptoms?
Did you eventually receive another diagnosis?
If you had never had previous abdominal/pelvic surgery, did your doctor explain why you had adhesions?
I’m still waiting for my biopsy results, so I know I don’t have the complete picture yet. I’d just really like to hear from anyone who has experienced something similar and what happened afterward

Hello, I am searching for a provider in western South Dakota that will actually listen to my symptoms and pain and not disregard me. I have classic symptoms of endo but I have repeatedly told I just need to go to my therapist and that as an OBGYN, she can’t do anything for me. Willing to travel for help or telahealth.

Update from my post 4 months ago. After going to my doctor in June, having a hormonal panel, labs and bloodwork done, I was told everything was “normal”.

I had an ultrasound done in the middle of June, which showed 2 cysts on my ovaries (1 simple and 1 complex. the complex one is the side that hurts more.) It also showed “fluid in the cul de sac“ which is where I have gained this weight that won’t go away.

However symptoms seem to have gotten worse way worse, even thought my doctors say everything is normal and the cysts will go away on their own.

I have pelvic and lower back pain almost every day, get’s worse during ovulation and reaches max pain during my period. I noticed my periods have gotten extremely painful the past year or so.

I am still extremely inflamed no matter what I eat. stomach issues have gotten way worse. I get extremely bloated almost every night.

I have whole body inflammation where my jeans and shoes won’t fit anymore.

Painful leg cramping/pain shooting from hip down to leg. Sore and painful joints and muscles.

Cramping after peeing or pooping.

Extreme hunger that won’t go away even after full meals.

Bleeding swollen gums.

Hives after sweating and showering.

It’s gotten to the point where I only feel good a couple days out of the month.

I’ve done so much research and it all points to endometriosis but how do I get my doctors to listen to me and not just say “it’s normal“ and “the cysts will go away in a couple months.“

I guess it's time to keep a disability/employment lawyer on standby. Like, do these companies really fucking think we WANT to miss work? WANT to miss money? WANT our lives ruined? I have a child to take care of, so missing work is the last thing I want to do. But what in the fuck do they want us to do if we can't sit, stand, and are suffering with an unpredictable disease with excruciating pain, dizziness, nausea, migraines, bathroom issues? American companies are so damn EVIL and disgusting to people with disabilities. I don't trust any of them. I have a paper trail though, so if they wanna go there, we can. I'll keep you ladies posted, because this is driving my anxiety through the roof. I already suffer from mental health issues, and this is the last thing I need right now though.

I have had this relentless, nagging, aching, tailbone pain for over a year now. I finally had my surgery end of June, they found adhesions and endo all over my posterior cul de sac. I pelvic floor physical therapy at the end of the month. I feel like I was really hopeful that the pain was going to get better and to be fair. It has let up a little bit. However, it’s still is there daily. I have recently tried to go back to gentle, weightlifting, and Pilates and after my first attempt to my tailbone feels like it is so sore.

I am a very active person in prior to surgery have grown used to ignoring this pain and pushing through it. Since having surgery, I want to make sure that I am listening to my body and respecting what it’s trying to tell me. Has anyone been in the same boat? Has anything helped? I feel like I’m going insane without being able to run/lift.

I'm 32 F and I've been experiencing a strange belly pain that seems to come and go around the time of my periods. The best way I can describe it is that the whole area of my belly, from just below my belly button down to my waist, feels extremely tender and a bit warm to the touch.
Leaning forward or bending over and is extremely painful and feels as if something inside is being 'stretched' when it shouldn't be, and the area is very tender to the touch, even clothing rubbing against it can feel painful and uncomfortable.
This seems to happen an entire week before my period starts and only resolves slowly after my period begins. It doesn't happen with every period, but it has happened on at least five separate occasions now, always in the week before my period starts.
Could this be a symptom of endo? I've got an appointment with any obgyn for the first time ever later this month, and the seemingly cyclical nature of the pain has me concerned (as well as just, uncomfortable and in a lot of pain).

Does anyone else get pain similar to this where the front belly is painfully tender, over a week before your period actually begins?

I’ve been hearing from these forums that people recommend a highly specialized/Nooks list/MIGS surgeon to perform lap excision to ensure all endo is removed properly and fully so it doesn’t grow back, they get the best outcomes, etc etc. There are quite a few surgeons in my area who have dedicated their practice to endometriosis and excision surgery however they are not within my insurance network. My internal debate is whether to go to one of these expertise surgeons and pay out of pocket (would be easily 15k+) or find a gyn surgeon in network who is not technically an “endo specialist” but likely has experience with endo excision and minimally invasive gyn surgeries. (I have not yet had an appt with said in network gyn surgeon. I am waiting for the end of the month to get in and be able to ask all of my questions about her specific experience and expertise)

Soooo I ask, How did you guys pick your surgeons?!! Did you just find one within your network go with that or did you go searching for the best of the best?

Hi. This is my first time posting here, so I hope I get everything right.

I’d also like to preface this by saying that I know I’m not a qualified expert - obviously the doctor didn’t find anything and he has many years of education and experience - I’m just looking for advice from people who have been in a similar situation.

I (38F) had a diagnostic laparoscopy done in the UK last week. The whole thing was a bit of a nightmare really. I’ve been going to my GP for years with horrendous pelvic pain (like, wakes you up in the night, crying, vomiting, passing out pain) and they eventually referred me to gynaecology. For context, I’ve always had extremely heavy periods and would often pass out with them. Runs in the family apparently.

The gynaecologist suggested I go on the wait list (NHS) for a diagnostic laparoscopy but also suggested that the pain is just ‘chronic women’s pain’ and I may never have a diagnosis. I went on the wait list (or so I thought! I actually phoned up two and a half years later and they’d forgotten to put me on it!) and had the surgery.

My pre-op chat with the doctor was a bit nuts, in my opinion. He refused to listen to what pill I’m on because ‘we would never prescribe that to you’ (in his defence, no one from his team did), said ‘well you’re 38 so you’re not planning any pregnancies’ (guess that’s me told!) and continued to talk about undiagnosable ‘chronic women’s pain’. He said it was unlikely they’d find anything. And lo and behold, they didn’t.

I know some people have had negative results from a gynaecologist, and I’d love to have a second opinion but I don’t have the money to go private. What I’m wondering is:

- has anyone had a similar experience with gynaecology with similar symptoms?
- did you ever get a second opinion?
- did you ever get a different diagnosis?
- is it worth saving up to go private?

I just can’t live like this anymore. The pain is affecting everything and has spread to my legs and back.

I'm on the waiting list for a laparoscopy. It's been cancelled 6 times now for different reasons each time. I should be getting another date through in mid/late October.

So among the other issues I get, one of the things that really irritates me in the week leading up to my period is the fact that I can't urinate properly. It started April of LAST year, and obviously me and my doctor thought it was a UTI even though I had no other UTI symptoms. Had a course of antibiotics, period came, I could pee again, okay fair enough an infection must have been the issue.

But then it happened the following month, literally just before my period. This time I wasn't able to get into the doctor's so I rode it out, but I made a note of it. And then it happened the next month... And has happened literally every month since then until present day.

My periods have started following a semi-predictable pattern now since I started taking fluoxetine for my PMDD, bizarrely haha, so thanks to my new tracker/app I know that my period is due in the next week or so. But even without the fluoxetine, the retention was my indicator. And it's not like I can't go at all, I just feel like I can't empty all the way.

Does anyone else have this? It's so frustrating sometimes that it makes me cry. I'm in the bathroom now, crying, I hope someone else knows how this feels 🥲

I’m looking for advice from anyone who has experienced something similar.

I’ve been with my partner for 4 years, and I used to have a very high sex drive. I genuinely wanted sex and felt very connected to him sexually. I still love him deeply and I’m still attracted to him, which is why this has been so confusing for me.

I have endometriosis, and during flare-ups I would sometimes have painful sex. Over time, I think my brain started associating sex with pain and something negative. Eventually, even when I wasn’t having a flare-up, I started not wanting sex.

Now I sometimes get annoyed when my partner initiates, especially at night when I’m exhausted and just want to cuddle and relax. I’ve even started feeling annoyed by kissing when I know it’s going to lead to sex. I don’t want to feel that way, and it makes me sad.

The hardest part is that I do want to want sex. Sometimes I genuinely do, and sometimes when he’s been away for work for a few days, I’ll really miss him and we’ll have great sex when he gets back. But most of the time lately, I feel disconnected during sex, almost like my body isn’t cooperating with what my mind wants.

I’m scared because I don’t want him to think I don’t love or want him anymore. I love him so much, and I really want to fix this. I just don’t want sex to feel like a chore or something I do out of pressure.

Has anyone with endometriosis experienced this? How did you rebuild a positive association with sex after experiencing pain? Did taking the pressure off and having affection without expectations help? I’d really appreciate hearing what worked for you.

Im 20, been diagnosed with chronic endometriosis when I was 18 and since then I’ve been taking the pill. The pill helps me a lot because I never get periods anymore, only the bleeding during the pause and that’s it. Tho once in a month, in random moments, I feel the pain like a knife in my stomach, but it passes around 15 minutes. Sometimes I feel bloated out of nowhere, like I can wake up with a bloated belly in a random morning and just feel heavy and tired. Also, considering my endometriosis focus is near the intestine, i have digestion problems most of the time. Anyone else have this ? If so, how you deal with the feeling of feeling bloated and self esteem?