I’m stage 2, excised via laparoscopy in 2024. But they excised some and ablated some despite me expressing I don’t want ablation.

It was found everywhere but intensely on my left side pelvic wall and in my pouch of douglas. After they excised POD my lightning ass pain reduced significantly.

Now it’s back. My pain in general is coming back. I can tell it’s growing back. It’s agony. What the hell do I do? Anti spasmodics don’t do much.

Hi everyone! I have pelvic floor therapy tomorrow and honestly have no idea what to expect. If anyone would want to share their experiences I would appreciate it! I am mostly wondering what I should wear, and how draining it is or if it’s painful at all. I have work after in the evening and am hoping to still make it. Also wondering what I should wear?

I am about 3 months out from laparoscopic excision surgery and honestly been having so much bowel and bladder problems since surgery. Also haven’t had sex yet due to my specialists advice. Hoping this helps!

Hi all,

This subreddit has been so helpful to me on this journey so I want to take a minute to thank all the women who lend their time to answer my questions and others! Anyways, lately I’ve had to fully cut out caffeine which ,I’ll admit, I have been very dependent on over the years to help manage my chronic fatigue. Cutting it out has been so rough and I just don’t know what to do about it. It’s seriously starting to affect me in my everyday life. What do other women do to help with this severe, bone deep exhaustion?

i feel like I'm going insane because no matter what i do not bleed at home. not a drop. but if i go outside to school etc, i end up staining my underwear red. and no, it's not from sitting down. i do the same amount of walking inside my house on a weekend as i do walking between classes. I'm even on double the dose of the pill and it's still happening. is there an explanation for only bleeding when leaving the house?

Hi everyone! ❤️
Has anyone paid for an MRI second opinion with Dr Moji Balogun at Midlands Women’s Health?
I’ve booked a review with her after getting conflicting NHS MRI reports about possible deep endometriosis.
Just wondering if anyone’s used her before and what your experience was like? Did she find anything your original report missed?
Thanks! x

Hi everyone, in 2 weeks I will be having a hysterectomy as well as endo excision and shaving endo off my bowel. Last year I went on Visanette for 7 months and it was awful. I gained 8kg over that time which was so abnormal as I’ve always maintained a very slim shape with minimal effort. I tried dieting and exercise but nothing shifted the weight. It’s taken almost a year to feel like myself again and finally in the last 4 months I’ve dropped the 8kg but now I’m due for a hysterectomy (leaving ovaries in) but I’m really afraid that it’s going to mess with me and cause hormonal weight gain again. Any advice appreciated 🫶🏼

Antécédents : endométriose sur ligaments utero-sacré, Âge : 18ans, Sexe : F, Traitement : pilule en continu depuis 6mois

Bonjour je viens ici car je ne sait pas trop à qui en parler. Depuis plus d’un ans et demi j’ai des saignements et des grosses douleurs pendant et après la pénétration, qu’elle qu’elle soit. J’ai consulté il y’a maintenant 10mois une gynécologue qui a tout remis sur le dos de mon endométriose (sur les ligaments utero-sacrés) et sur mon périnée hypertoniques, sans m’examiner, (tout en remettant en cause ces deux diagnostics) et sans me donner de solution. J’ai peur de demander un deuxième avis par peur d’être pas prise au sérieux. Est-ce que c’est déjà arrivé à quelqu’un ? Que faire dans ce genre de situation ? Je tiens à préciser que je suis jeune (18ans) donc j’ai peur d’aborder ce genre de thème avec un professionnel de santé en face à face surtout que ma mère tient à m’accompagner chez la gynécologue, ce qui rend le moment d’autant plus gênant pour moi.

So I suspect endometriosis with moderate pelvic and lower abdominal pain (mini pill and ibuprofen lysine being the main things that help, IBS and bowel disease ruled out).

I have this symptom which makes me feel ridiculous… When I run, I feel pain as my tummy roll bounces. Literally each bounce feels like it pulls something deep on either side, kind of just above where I imagine my kidneys are. Had this for years. If I make a little shelf for my belly with my hands the pain doesn’t jolt the same way. My guess is that it is yanking on some ligaments. I don’t want to stop running because afterwards, I feel so much better over all. But it puts me off.

I’m wondering if I am alone in this, and if not, does anyone have any tips? Like a way to tape my tummy up or something?

And a more general question, is it ok to call it “suspected endometriosis” given my symptoms, or does that misleadingly sound like a doctor has suspected it? Still very early on the official side of it. The symptoms seem a slam dunk for Endo, but I am a newbie to all this and don’t want to use the wrong terms when the community gets gaslit so much.

I had surgery on 9/15 and am having my first period post op now. Before surgery, my pain was always debilitating on day one. I got through day 1 and 2 of my period this time with some pain, but nothing like before and thought I was in the clear. Now I’m on day 3 and the pain is REALLY ramping up and not being controlled by meds. Has this happened to anyone else? Any advice?

I’m 33 and had an emergency hysterectomy in 2023. I still have my ovaries, but my cervix was removed, so I have a vaginal cuff. I also have endometriosis and deal with chronic pelvic pain.
I’m also a virgin, which makes my situation a little more complicated.
It’s not because I’m waiting until marriage. I’ve just never met someone I felt comfortable enough with or had that kind of emotional connection with. I don’t want my first time to be with just anyone.
I’m hoping to start dating soon, and if I meet the right person, I really do want to experience intimacy. But I’m nervous. I’ve never had sex, and now I’m wondering how having a vaginal cuff and endometriosis might affect things. I’m scared it could be painful or that something could go wrong. I know I’ll need someone who’s patient and willing to take things slowly.
I’m also not sure how to explain all of this to a man without scaring him off. How do you casually tell someone you’re a virgin, you’ve had a hysterectomy, and sex might be painful? 😅 I don’t want to make it into this huge thing, but I also don’t want to pretend my circumstances are different than they are.
And then there’s the infertility part. Having my hysterectomy and losing the ability to carry my own children has been absolutely devastating. It’s something I’m still grieving, and I’m terrified of having to tell someone I’m dating that I won’t be able to give him biological children together in the traditional sense. I know having children is a dealbreaker for some men, and I completely understand that, but the thought of someone walking away because of something I never chose really hurts.
I want to be upfront about it because I don’t want to waste anyone’s time, including my own. But I also don’t feel like I should have to tell someone my entire medical history before they’ve even gotten to know me.
I guess I’m wondering if anyone has been in a similar situation. What was sex like after your hysterectomy, especially if you have endometriosis or a vaginal cuff? How did you explain everything to your partner? And for those who were single when they had their hysterectomy, how did you navigate dating and telling someone you couldn’t have children?
I want to believe I can still have a normal relationship, fall in love, and have a fulfilling sex life. I’m just scared that everything I’ve been through is going to make finding that harder than it already is.
Any advice or personal experiences would mean a lot. ❤️

I started orlissa 9 weeks ago. I’m on day 67 I think. I’m having a horrible endometriosis flare. I am stage four severe endo, with a frozen pelvis, bowel endo and DIE. Prior to starting orlissa my estrogen level was 19, very low. I am a breast cancer survivor and the treatment I did for the cancer put me into deep peri menopause. I wasn’t having bleeding cycles but I was getting symptoms of a period every other month or so.

When I first started the Orlissa I noticed improvement less pain especially in the bowel spots where I’m tethered but now this past week and a half I’ve been in a very bad active flare it’s almost ER worthy and I make trips to the ER when my endo is unbearable and I get mechanically obstructed and have to stay in the hospital for a few days get IV meds and other special fluids until the flare subsides and I can eat again.

I’m worried that the Orlissa is not working and that since my body was having active flares with a very low amount of estrogen that the Orlissa maybe isn’t strong enough to stop the flare ups. I did read it can take 3-4 months to get over that cycle hump and feel long lasting relief. I saw some great results in the beginning but this flare is a 9/10 on the scale of bad flares I’ve had and I’m feeling pretty defeated and wishing my endo specialist at north western could cut it all out including my uterus and ovaries so I don’t have to do this anymore

Do I just need to let the medicine kick in and let it have more time to work or am I doomed to be in excruciating pain until I can get my third surgery. What’s your experience with the medicines ability to help with flares and pain?

I've already been on slinda, synarel, mirena in past. They want to check my bones to makw sure they're OK first for me to go on ryeqo. Mean while I have a constant fucking migraine that never completely goes away. I'm on IUD atm keep getting utis(was getting them even before the IUD). Incontinence snd they're suggesting ryeqo for symptoms management when I bleed im a psycho/banshee which I told them that. Mirena again they suggested I said no i would have come off it years ago for a fucking reason. I dnt want to be angry all the time. And my moods effect my family. So they've said keep IUD in for now. Yet the side effects for ryeqo say increased mood swings, depression, irritability ,MIGRAINES. I know I dont have to take it and I know it doesn't mean the side effects will come but I dont k ow if I want to risk it. Im sick of trying trwatments for migraines endo utis everything im sick of being sick I hate my body. The funny vision and all my other symptoms. Doctors dont fucking listen. I dont want to experience more depression than I already do. What you want to put me into medical menopause again like Im a fucking tap.

I have deep infiltrating endometriosis and 2 endometriomas. Lately I haven’t been experiencing pelvic pain, but I’m experiencing all kinds of other symptoms that I think are from the endometriosis. Constipation and digestive issues, nausea, bloating, fatigue, stabbing pains in my joints, aching legs, rectal pain. Can anyone relate?

Hi everyone, I finally my laporoscopy yesterday.

For context:

Had terrible periods for the last 16+ years. Then for the last year, I've had constant chronic pain in my lower right abdomen and would get worse during my periods. Even during pregnancy last year my abdo pain was the worst I've ever felt.

Referral time:

Referred to gynae this June and eventually seen by consultant in late Sept who put me on waitlist as urgent for laporoscopy.

My pain got so bad it was running from lower right abdomen, right up to just under my right ribs.

Getting worse:

On Tues ambulance had to be called as I started to get chest pains and struggled to breathe, couldn't eat, pain was so intense. I had lots of tests at the hospital, all doctors said its a gynae problem and I need to have lapo asap.

Having to advocate for myself:

Those doctors told gynae and told me to call them too as I have to advocate for myself. Luckily one gynae receptionist kept trying to admissions line for me. Eventually I got through, explained how it had escalated and that I was brought into hospital. Admissions said they could do the lapo in 2 days time (yesterday) finally!

Result:

No endo was found! Gynae was all fine, however surgeon said my bowel (intestines) at the top under my ribcage and by my lower right abdomen are really stuck to my abdominal wall and I need to have bowel surgery.

Bowel adhesions behave like endo:

The symptoms are so similar to endo so I can see how it was suspected for so long:

• Bloating

• Severe abdo pain

• Pain worsening during periods

• Digestive issues

I have had several scans, MRI and CT scan and bowel adhesions this bad were ONLY diagnosed because I had a laporoscopy.

I'm sharing this to help anyone else who is waiting on them to act, YOU have to bug them constantly do whatever you can, call and email doctors over and over again, complain to PALS, be a nuisance. Whatever you need to do to be escalated.

Hope you all get the care you need x

My MRI showed a 3.8 cm endometrioma on my right ovary and then a 10 x 7 mm lesion suspicious for deep endo on my left uterosacral ligament. I honestly didnt even know endo could show up like this on completely opposite sides. On top of that there is some fibrotic thickening and tethering mentioned too, so now I keep wondering if anyone here had a similar pattern and what they eventually found during surgery?

I’m having a lot of fear around getting pregnant post op and I’m seeking advice/experiences of anyone who got pregnant for the first time post excision surgery.

To provide some context, I’ve had pretty severe medical anxiety for most of my life due to a high vagal tone that causes me to pass out during blood draws, IVs, and some shots. It goes hand and hand with the PTSD I have from an abusive childhood, so anything medical where I have no control over what’s happening to/in my body is kind of the perfect storm of chaos for me. There was even a time during my EMDR treatment for the PTSD that I felt like I didn’t ever want to do the whole pregnancy thing just for all the medical fear that I have. pregnancy felt like body horror to me. But I felt like I worked through a lot of that and decided I really wanted to start a family with my husband.

Fast forward to Jan of this year, when I met with my new obgyn to discuss how to prepare for pregnancy given my known fibroids and heavy, painful periods. She immediately suspected Endo, and I had my excision surgery this March. Stage 3 plus two large fibroids. My tubes were fine, despite some lesions, but my uterus took a lot of damage from the largest fibroid, and she told me I would have no option other than a C section when it came time to have a baby. This was a huge blow, because I was leaning toward vaginal birth.

The recovery from the surgery brought back so much of my medical/body fear. I checked my incisions compulsively, and to this day, 7 months later, I still go into pure panic if I feel a twinge in the healing scar tissue and muscle fascia. I wasn’t able to handle any of the BC options we tried to suppress my hormones during recovery (they made me literally insane), and I’m terrified the Endo will come back.

My body feels foreign to me, and unsafe. I’m terrified to get pregnant and to have to get my stomach cut open again for the c section (which they’re going to have to sedate me for because I start hyperventilating just thinking about it). Everyone is so dismissive when I bring up my fears, but I just don’t feel like pregnancy is something I should have to grit my teeth through. I’m genuinely considering adoption at this point, and I can’t help but feel insane for my fears.

Sorry for the long post, but I’m desperate for anyone who has had an even slightly similar experience or background and still did the whole pregnancy and specifically c section thing.

How was it for you and how did you get through it? Was it better or worse than you imagined? Are my fears justified?

Hey everyone, I had excision surgery on Friday (16/10) and had my ovaries suspended. I have some pretty nasty bruising on my right side around the stitch which in hospital did have my dressing fill with blood. Since returning home yesterday afternoon I’ve had that same dressing need changing 3/4 times due to excessive leaking and wound drainage. The liquid is not smelly, mostly a mix of clear liquid and blood, GAU is closed until morning but will ring them first thing if no change. Just wondering if anyone has had a similar experience with the stitches. All dressings and wound changes have been photographed

Hi everyone! I’m feeling quite anxious and would really appreciate hearing from people who have experienced this.
Yesterday, I had a very intense pain in my lower abdomen on the right side during sex. The pain lasted around 15 minutes and gradually improved when I stopped moving and rested. About 6 hours later, I only felt discomfort when walking, and now the pain is gone, although I still feel some pressure in my pelvic area.
I have a history of ovarian cysts, so I’m worried about the possibility of ovarian torsion and, especially, ovarian necrosis.
For those who experienced torsion that resulted in a necrotic ovary:
How long did you have symptoms before receiving treatment?
Did your pain come and go, or did it remain constant?
Did you have any symptoms after the pain subsided?
How was the torsion diagnosed, and what was your overall experience?
I’m not looking for a diagnosis, just personal experiences from people who have been through something similar. Thank you so much!

In the last six months, the symptoms I've been having that point potentially to endo have ramped up significantly. I've recently gone to see an gynecologist for the first time and am due to go in this week for the results of a pelvic ultrasound, the second I've had.
I'm honestly expecting they'll say as they did the first time that they don't see anything on the ultrasound, which the gynecologist said can be the case a lot of the time even if you do have endo, and that I'd need laparoscopic surgery to know for sure.
She also made it sound particularly urgent that I consider it if the symptoms are getting worse, and have been progressively doing so for a couple of years at this point.
But just how urgent is it? The only reason I even say that is because wait times for surgeries such as laparoscopy can be far out there, and I have to consider if I'll need to go to a specialist or something for that matter, but I'm racing the clock until my insurance runs out at the end of the year.
Is this something I should be scared could progress to a threatening degree quickly if I'm unable to get laparoscopic surgery for a prolonged period of time?

Period literally didn’t hurt. I was waiting for be tortured as per usual and it didn’t happen

the only lifestyle change I did is take daily: 700mg omega 3’s (DHA + EPA), iron + c every other day, magnesium glycinate 1-2x a day and vitamin d daily. The iron before breakfast, the omegas and D after a meal and the magnesium after dinner. (Note I’m vitamin d deficient and critically low on ferritin because of my heavy periods. You may be too, check.)

Heavily suspect it was the high dose high quality omega 3’s + heavy / near total reduction in sunflower oil and omega 6 heavy food

I’ve been doing this for 2 months or so. Changes this month, last month I had no changes. Maybe it wasn’t this at all, maybe my body just farted itself correct this month and next month we’re back to pain. Hopefully not.

Hey, maybe this helps someone

Sadly I still bleed as much as always and still have all the endo I ever had but the worst part, the extreme pain, didn’t happen this month.

No promo but I use the Sunday naturals omega 3’s that have to be kept in the fridge after opening and are stored in a dark bottle with an antioxidant. Makes a big difference in anti inflammatory factor retained

Also, I eliminated sunflower oil from my diet due to high omega 6 balance. I switched to canola oil for baking and any time I need tasteless oil, and otherwise olive oil.

Note: this isn’t a substitute for medical advice or birth control / surgery. I will still go on BC to control my blood loss and probably get surgery and I suggest you follow your endo specialist’s advice. But its just nice to improve whatever I can

So I'm 6 weeks into my current flare up and I had last week off work because I was so exhausted. I pretty much slept the entire time and I started to feel better to the point it hadn't changed but it felt mentally manageable.

Then I had three days with my toddler (I have Fridays off).

Is it bad that I'm considering taking more days off work because I may have over done it the last three days with my son?

Not that anyone at work knows but I went to a farm, soft play and football. And then I'm claiming I can't sit in a chair in my dining room half assing my job in my pjs with a hot water bottle.

Is it bad that I want more days off after so I can catch up on everything that's turned to chaos because of this flare up?

I was diagnosed with a 10cm endo cyst nearly 3 yrs ago. I tried the hormonal meds instead of surgery nd after 2 years of meds, my cyst is nearly gone or gone ig?..one scan didn't pick anything whereas other showed 0.3 something. I'm happy that it worked nd am now continuing the meds to avoid a possible reoccurance, only because I don't have any major side effects due to bc. I still get painful cramps sometimes at night randomly tho.

Now, I've been seeing new info on Endo being found in other body parts, in brain causing Epilepsy etc. and I'm kinda freaking out!? Every new piece of info I come across makes me wonder if the endo could have spread somewhere else without me knowing 😭 Like, what if something develops in another part of my body and I don't notice it until it becomes serious? 🙆‍♀️

I don't want to stop educating myself about this condition but at the same time, I don't want to end up constantly worrying about every possible thing that could go wrong! It's like I want to stay informed, but I also don't want to spiral every time I read something new.

Am I the only one who feels this way? How do you guys keep yourselves informed about endo without letting the anxiety get to you?

Is anyone else feeling this way, even while undergoing treatment?

Since I received my endometriosis diagnosis, I've been feeling incredibly tired even when I haven't done anything during the day. It's an overwhelming fatigue; I fall asleep anywhere, and I wake up extremely tired, as if I haven't slept in days.I'm taking so much vitamins, vitamin B12, vitamin D, omega-3, but even so, it seems to have gotten much worse; there are days when I cry from exhaustion.

I'm studying for exams, and it's hindering me and drastically affecting my progress.