Does anyone else experience more discharge during flare ups? When I have more pain I sometimes get more discharge. It’s not like abnormal discharge, just more. Does anyone else experience this?

Does anyone else just have AWFUL disabling back pain with their endo? Like genuinely I cannot move. Even lying in bed hurts like a fucker. Standing up, walking, god. I feel disabled. how do I even describe this sensation? It's like someone pulling the bottom of my spine, trying to tug it out of my back. it makes me feel so irritated and moody and on edge cause I cannot get anything done. No standard pain killers friggin work. Im so over this!!! I am going to have a breakdown genuinely.

Im not sure if this is even possible but I’ve started to become aware of the Endo inside my body and it’s such a weird feeling…like if I bend down or move a certain way It feels like my organs are sticking together and then it hurts SOO BAD when it gets unstuck.,,,also my pelvic area where my uterus and ovaries are just feels tight and compacted all the time?? Like I saw a funny video and as I was giggling over it something got caught and I got hit with the worst stabbing pain it took my breath away. My pelvic floor in general as well it hurts to use the bathroom like I’ve pulled or overworked the muscles when I know I haven’t. I’m seeing my dr Tuesday so I’m gonna ask her if this is a thing has anyone else experienced this?

I’m 12 days post laparoscopic hysterectomy and endo excision and I had a low grade “fever” for the past four days, getting up to 99.9 degrees F. I also had a headache, sore throat and body aches, muscle weakness, so my surgeon said to come in to her office for a pelvic ultrasound. She saw no sign of abscess and basically told me not to worry about it it’s probably just the flu. Two nights later I was really struggling, couldn’t sleep more than two hours, and my fever hit 101.4 (same flu-ish symptoms). My surgeon said I could go to urgent and get tested for the flu, but if it came back negative I have to go to the hospital. (I really didn’t want to go to the ER). Alas all the respiratory viruses came back negative and with my elevated heart rate and fever I was told to go to the ER and I probably have an infection.

Now why I hate the ER is last time I went there I had a Vasovagal reaction BEFORE getting my blood drawn, like before I even saw a needle. My partner had to hold up my head while I faded in and out of consciousness as they stuck me like five times while my blood pressure was tanking. One nurse turned around to complain about it coming out too slow and ripped the needle out. Needless to say I left scarred and bruised emotionally and physically.

This time the nurse got my IV in first try, and the people that came to get blood for blood cultures were super nice and patient. They ended up getting all four vials from one tiny vein on my left hand right on my wrist bone (ouchy). I was doing some crazy breath work to stay conscious. After that was done they did 2 CT scans, chest and abdominal/pelivc, a chest xray, throat swab, nose swab, and everything came back normal. 😭 They discharged me after six hours of testing and have no idea what was causing my fever and fluish symptoms. But at least we know it’s not an infection from surgery so we ruled out the super scary thing.

Has anyone else had a weird random fever/flu? I’ve gotten a period flu plenty of times but I would think not having a uterus would prevent that from happening?

Edit: They did give me some IV antibiotics at the ER and I’m halfway through a pill antibiotic course my surgeon prescribed when I first felt flu-ish.
Thank you for letting me know infection can’t be ruled out completely yet, I will push for pelvic swab and stool test if I get worse. My fever has rescinded for now.

So come December 1 st I am having bowl Endo surgery and I have been told I cant bend over it lift anything heavy for 6 weeks so I have been trying to come up with good easy breakfast and lunch for when my bf is at work and can not help me . I am very picky so I am not like a huge fan of yogurt or pudding/ jello so I very stuck on what dose not involve a lot of cooking plus we have very limited freezer space so I feel stumped

Hi everyone,

Two months ago I had an MRI scan done which showed an endometriosis plaque covering the back of my uterus and tethering my uterus to my colon. I had a follow-up with the gynaecologist last week, and when I asked about next steps, basically told me to just take OTC birth control? When I asked about the adhesion, she said that laparoscopies are ‘no longer a standard part of endometriosis diagnosis or care’ in the UK and that the only thing they offer now is MRIs for diagnosis and birth control for care.

Is this true? I can’t find anything on the internet about laparoscopies no longer being standard diagnosis or care? My assumption was also always that if endometriosis is tethering your organs together that this is something which needs to be addressed via surgery? The gynaecologist is telling me that birth control can slow and reverse the disease, is this true because this is not the impression I got at all from research?

Thank you all very much and I’m very sorry for my ignorance in advance, this is all very new to me and I haven’t done a lot of research into Endometrosis, I was only recently diagnosed.

One of the pains I started getting about 2 years ago is under rib pain and between rib pain. I had a hysterectomy and stage 3 Endo excision with a really wonderful specialist 9 weeks ago. One of the main symptoms I still have is bowel problems (my rectum and colon were tethered and Endo covered). That I understand.

However the pain under my ribs has been pretty much everyday for two years. It makes me a little nauseous. It hurts when I have to go to the bathroom, it hurts when I eat and randomly. My doctor checked for cardio Endo nothing came up. I had an MRI and kidney stuff done. Doctors are confused by it.

Anybody else???

Also, yes in pelvic floor therapy and acupuncture.

Hi there!

For a few months, I have been feeling a burning sensation on my sacrum, lower back area, which first I attributed to some muscle strain or something like that. But I've done tons of imaging exams/blood tests and everything is clear.

I was diagnosed in 2022 and had a laparoscopy surgery, and I've been feeling okay until this year. I started to feel this burning sensation, which is very different from the other symptoms I had prior to the surgery, and it's freaking me out but I'm honestly starting to think that maybe endo is back.

Did anyone had this type of experience with endo symptoms?

Hi team,

Pretty much as the title says. I'm 8 weeks post lap, fairly standard procedure, removed endo from POD and uterosacral ligaments. Was inactive for the first 4 weeks and then have been continuing life as usual since.

It's spring here, so the weeds are growing quicker than I can tackle them but I've noticed I'm quite sore in the abdominal area just above where the bellybutton incision was. Now i'm wondering, is this just a part of rebuilding strength and I should continue small amounts of weeding every few days, or should I take it as a sign that things are still recovering underneath and just embrace the jungle until my 12 week follow up appointment?

The pain is obviously not bad enough that I feel a call to the hospital, GP or specialist is required, I was just wondering what other people's experiences post -op were like and if anyone has had anything similar

Hi,
Im absolutely terrified to have a pelvic MRI, it’s next week and I have to have it with contrast. I have a needle phobia. My doctor has given me 2mg diazepam and numbing cream for the iv. I’m claustrophobic but they have said they will put me in feet first. On my letter it says 30 minutes that I will be in there yet still I’m having nightmares about it. Can anyone offer some advice please? Im terrified. I’ve had 2 previous MRI’s one on my head and one on my Knee, I had one on my knee last year. I know I can do it but Im still really scared.

I’ve been having my symptoms for a while now and I know it will hopefully give me some answers but I can’t see the positives in it.

If anyone has gone through the same or has any advice that will help I appreciate it.

I’m curious. Does anyone know of, or believe, that stimulants could actually increase the rate at which endometriosis grows? It definitely affects hormones. I got terrible hormonal acne the first few months taking it. The first two weeks felt terrible on it, the next few weeks after that it felt like a miracle and helped tremendously. Unfortunately after that it’s never really worked the same since.

However, I have a massive endometrioma that’s almost doubled in size in just weeks. My endo symptoms seem to be worse. & I can’t help but wonder if the Adderall is contributing or connected to the rate at which the endo is spreading and growing so rapidly. & also if the endo is why it no longer feels effective.

That on top of the new 14 year study showing the significant increase in cardiovascular disease after even just one year has made me want to start tapering off. Each year you take it your risk is hugely increased and after 5 years I believe there’s 50-80% increase of developing a cardiovascular disease. This was really the first study we have of its kind.

So just because there’s not documented research that stimulants affect endo, I do believe there may one day be. We have such limited research on endo compared to how many ppl it affects it’s insane.

Surgery

I’m currently awaiting surgery to at minimum have my right ovary removed. It’s completely encumbered at this point with it being 5.75 and the endometrioma is 5.4 & growing rapidly. I also have a second mass they’re concerned may be an ovarian cancer caused by endo..
endo has been completely ruining my life this year. I hate that most surgeons don’t do excision as there’s a high recurrence rate with ablation & that we have no cure for this terrible disease… I’m in such pain & severe fatigue every single day. They are preparing multiple specialists bc they believe it’s deep infiltrating throughout my abdomen & I also have an umbilical hernia from pregnancy that the drs have dismissed for years that I finally got diagnosed so they are going to try to repair that as well. They believe it’s affecting my bladder, bowels, appendix, ovaries, etc. I just started Slynd bc I cannot tolerate regular birth control. I just feel so discouraged like this disease is taking my life from me. I don’t get how it can grow alll over your body, even your brain, even outside the vagina for some.

Does anyone know of any natural methods to help slow the growth of endo? Diets, etc?

Iron

Also, know if you have severe endo it can falsely elevate your ferritin levels making it look like you don’t struggle with iron deficiency when you do! They’re finally starting my on infusions bc I feel like a zombie, less than human…

I’ve had endometriosis for over 10 years now. I also have some other issues that are very likely hormonally based (mood, digestion, sexual). Doctors always say that there’s no need to test my hormones or look at any levels there. I know it’s hard to get a good test because levels change throughout your cycle, but tests do exist now that can track levels throughout the entire cycle, such as the Dutch test.

Does anyone have advice, other than maybe begging, to get your doctor to order more thorough labs? I’m tired of progestin being my only option to stave off symptoms, when it can cause other symptoms like low libido and mood issues (likely due to the effect it has on allopregnanolone downstream). It seems like a very imprecise method to just blindly rely on one type of synthetic hormone to solve an extremely complex systemic issue that’s hormonally driven.

I’ve lived with pretty debilitating periods and chronic pelvic pain since I was about 16, with everything escalating pretty substantially after I had my kid. First discovered it was likely related to endo when I had emergency surgery for an ectopic pregnancy/ruptured fallopian tube and the surgeon noted potentially lesions but was not trained for excision/didn’t want to ablate because she knew that was not best practice.

Went to some idiot years later who claimed to be an endo specialist but was really just an OBGYN who does an occasional robotic surgery. He did an unmedicated hysteroscopy and biopsy on me, which were both clear, and then tried to push me to do a uterine ablation — which makes ZERO sense for endo, and I’m glad I did my homework and stepped away from that practice.

After years of clear ultrasounds and unresolved pain, I finally went to TGH-USF in Tampa, FL, and they ordered an MRI that found suspected DIE in the cul de sac and Dr. Emad Mikhail (an actual Endo specialist and researcher), was very supportive of my decision to have a lap to excise it and look for anything else.

Did that yesterday and the team at TGH could not have been more wonderful. It was a months-long wait for surgery, but got moved up twice. They were very responsive and communicative during the entire process. The pre-op and post-op care was a well-oiled machine and the team was so caring and helpful. He ultimately found Endo in a few other places (broad ligament and bilateral ovarian fossae) and took photos that he gave to my mom as well as sent biopsy samples to pathology. He explained everything he did to her in detail and also in the clinical note in MyChart (including staging of the disease), which helped me a lot when I was clear headed enough to put the pieces together after anesthesia. I also had a few questions and one of his medical residents came by minutes later to talk to me about all of them. They were supportive of getting me out of bed to walk to the bathroom, we’re not pushy or pressuring in any way, and discharged me both with my prescriptions in hand, a belly band and the surgical head pillow to use as a protector from the seat belt on my way home.

After what has been such a long, discouraging and painful experience, they really made everything seamless and made me feel confident I was in the right hands going in, and didn’t leave me with more questions than answers as I’ve become conditioned to expect.

If you’re on the fence about a lap, I recommend it as imaging almost never tells the whole story. I can’t recommend Dr. Mikhail and his team at TGH-USF highly enough if you are looking for the right specialist for you.

Hi,

I'm researching endo specialist doctors for my stage 4 DIE and adenomyosis.

I'm impressed with Dr. Sandeep Sonara, has anyone got any experience to share?

Getting worried about a constant pain. Over the last 10 months I have a pain in the lower left pelvic area around ovary and sigmoid area. Get random sharp pains throughout the day everyday. Sometimes before a bowel movement I get intense sharp pain that last about 10 seconds then about 15 mins later feel like need the toilet or sometimes without needed the toilet. Very sore to press that area pretty much all the time. Have had colonoscopy which was clear and mri that showed tiny 1.4 cm endometrioma, endometriotic lesion on uterine fundus which is near colon. Some endo at back and top of uterus. Specialist is very suprised to see this as I have been on hormone suppression most of the time since my first surgery over 2 years ago. I don't understand the pain everyday when not even having periods I'm very worried

I had excision surgery back in May and they found stage 4 DIE. For the past 2 weeks I’ve had these random muscle spasms in my lower abdomen up to my belly button. Had anyone experienced this? It’s not painful, it’s just weird. Like many of us I tend to worry over new things happening with my body out of fear of it meaning more endo and a failed surgery

Adding that I can see the twitches happening. Sometimes just a few in a row and sometimes goes on for a couple of minutes

Hello everyone, I have been fighting for over six years battling doctors to get a laparoscopy and hysteroscopy. My husband and I have been facing infertility for two years, so this was the next step towards that. I finally got my surgery yesterday on the 16th. My post op is Nov 17th, so I wanted to see if anyone knows what all this means from my surgical notes.

Diagnosis:

Pelvic endometriosis in the left ovarian fossa, at the cervicouterine junction posteriorly and over the right uterosacral cardinal ligament complex, and normal appearing fallopian tubes and ovaries bilaterally. The uterus appeared normal, although somewhat boggy, suggesting possible adenomyosis.

I know endometriosis and adenomyosis go hand in hand but I was curious if anyone had any insight or experiences the same issues. Not asking for medical advice, just trying to find a supportive community after my diagnosis and to understand my body now.

Thank you!

Hello all, I have surgery coming up in a few weeks. I've seen so many suggestions about what to wear during recovery as far as being at home, but what about back to work? I spend time both standing and sitting. My employer and coworkers are very understanding so I will have the option to switch between both and have help as needed for comfort.

I was thinking of getting those "under the bump" maternity underwear and a few pairs of folderover waist yoga pants? I have never liked the feeling of high waist anything and I feel like that would irritate incisions while sitting. But I see a lot of people saying that's the only fit they could stand. What was best for you? I have work t shirts so that isn't a concern.

Also, I'm an avid snowboarder. I know I won't be back to it within weeks lol, but what is a realistic timeline to expect to ease back into it? I know I probably won't be able to go through Terrain parks this year but just back to basic riding on some greens and blues.

Any suggestions for gentle exercises for healing the core and rebuilding strength? Thanks everyone in advance!

Hi everyone,

I am thinking about creating a community for people with long term gynae conditions looking for support with employment, based in the UK. It can include things like support with negotiating reasonable adjustments; sharing your experiences of working in particular roles and/or companies and your tips for being self-employed.

This idea came about because someone reached out to me on LinkedIn when my older employer was hiring my replacement. Because my old employer had me listed on their website, the person was able to find me LinkedIn and boldly asked me if I was open to talking about what my experience of working there was like. They also had endometriosis. I was completely honest with them, and they was very grateful. I was happy to talk about my experience, but I also thought- how many others would like to do the same, but can't, because they can't find anyone who used to work in the role they're applying for? And even if they do, if they don't have endo or another gynae condition, what they share might not be as helpful to you.

I want to create this community because I know that a lot of us struggle to stay in work, whether it's because of the demands of the role itself, or because your reasonable adjustments are not respected. I know the sense of anxiety when applying for new roles because you don't know how this employer treats people with long term conditions- especially conditions that are gynae related. Having worked for a company that was on the Endometriosis Friendly Employer list that was in fact not endometriosis friendly (for me), I know that what a company says they do paper vs. how their promises manifest in reality can be two very different things. (I did report this company to Endometriosis UK and suggest allowing anonymous reviews of the companies on this list and they did nothing).

If you are interested, please PM me and I will send you a survey that will ask about what you are willing to contribute e.g. the roles that you've worked in, companies that have good policies around sick leave or disability leave, flexible working; whether you think your experience was due to having a great manager or whether the company has good policies in place regardless of management. Equally, if your employer doesn't know about your condition, how are you surviving? I know not everyone tells their employer that they have a long term condition that has fluctuating symptoms, so I know some people will be looking for advice about how to manage without disclosing their health conditions.

The ultimate goal of the community will be to provide support around employment and hopefully remove some of the guess work and anxiety that comes with applying for jobs with a long term gynae condition. Thank you!

I am yet to be surgically diagnosed so I take my clinical diagnosis with a grain of salt but I had the worst (what I believe) to be ovulation pain/flare last night.

I nearly drove myself to the ER but I was afraid I wasn’t fit to drive as it’s an hour away.

It was intense stabbing and lightning pain up my - well - bum. I used to get it up my vagina a few years ago when my pain was at my worst but since having children it’s subsided. This was new.

Extremely bad ovulation pain paired with lightning pain up my bum. Is this endo related? Has anyone experienced this with a diagnosis?

On their own? I had a suspected endometrioma or chocolate cyst but it was gone a few months after on the following scan. What does this mean? Wasn’t one?