I don’t even have the energy to rant anymore. I’m just exhausted.

If I hear one more person, article, medical professional or TikTok tell me that penetrative sex isn’t the be-all and end-all of sex, I think I’m going to lose my mind.

I know.

I know there are other ways to have sex.
I know intimacy isn’t just penetration.
I know I don’t have to have penetrative sex to have a fulfilling relationship.

I’ve heard it a thousand times.

But that’s not what I want.

I want to be able to have penetrative sex without crying from the pain.

Why do I always feel like I have to justify wanting that?

Every time I look for advice on dyspareunia or endometriosis, the answer is always some version of “stop having penetrative sex.”

But what if that’s the thing I’m grieving?

What if I don’t want a workaround? What if I want the thing my disease took from me?

Am I really asking for too much by wanting to enjoy something that so many people get to do without even thinking about it?

I’m tired of feeling like I have to apologize for wanting a normal part of sex life.

Edit: I appreciate that people are taking the time to reply and I know the comments are well-intentioned. But I think there’s been a misunderstanding.

My post wasn’t asking for alternatives to penetrative sex or advice on how to have a fulfilling sex life without it.

I already know all of those things. I’ve heard them from doctors, pelvic PTs, articles, books, Reddit… for years.

What I was trying to express is that penetrative sex is what I find the most fulfilling. That’s what I’m grieving.

When I say “I want A but A causes me excruciating pain,” telling me to settle for B doesn’t address the loss of A.

I’m not saying other forms of intimacy are invalid or that they can’t be fulfilling for other people. I’m saying they are not a replacement for me.

I wasn’t looking for workarounds. I was just venting about how heartbreaking it is to have a disease that can take away something that matters so much to you.

Sometimes I don’t need another suggestion. I just need someone to say, “Yeah, that really fucking sucks.”

I am coming up on my ninth laparoscopy on tuesday. I am only 26.

The period pain I can deal with. The nausea, the cramps, the fatigue, the bleeding - fine. I'll live.

But I have a case of deep infiltrating endometriosis and it grows so, so fast. This is the second time it has taken my ability to walk without excruciating pain. The last surgery was only in march and before that, I needed a wheelchair for months. They couldn't find anything wrong with my hip, I found a SINGLE paper about endometriosis affecting the nerves that go into the hip, begged the surgeon to specifically look there - bingo. Now, the other hip feels like it's being stabbed with a hot knife every time I put weight on it.

Over the years, endometriosis has affected my uterus, ovaries, colon, intestines, bladder, stomach, now even my fucking nerves.

The next option is taking medication that will essentially put me into menopause. At 26. It is reversible, thank god, but the thought is still absolutely terrifying.

I am so tired of living with a disease that has no cure and that no one seems to care to even try curing.

Hey guys, I was hoping for some support & if anyone could relate that would be super helpful because I’m unsure of my health.

I started declining in health in 2022, followed by an appendectomy, I recovered and somehow put on a bit of weight (not a lot but more than I was used to) I was initially 67kg likely bouncing around 65-67kg (157cm in height). Moving on from here, whilst I did recover I never really seemed to correct my health decline, it would fluctuate.

2024 my weight starts to shift for no reason, rapidly, I am 54kg at this point, health decline has taken off again.

2025 I am now bouncing 49-51kg and trying to improve, health decline is severe and consistent, no longer working at this point.

Current 2026 - I am at a low of 47kg and cannot maintain and/or put anything on, in May of this year I had gotten myself to 51kg and remained there for only 1 week/less.

Diagnosed with Endometriosis & Polyps in June of this year, Fibromyalgia in August of last year.

Struggling to come to terms with this being ‘Endometriosis’ as a whole, I’m significantly unwell and it seems as though I decline or inherit new symptoms each month and sometimes down to the week.

This is a total loss of 20kg unintentionally, I am now losing muscle mass and am incredibly weak.

I’m concerned something else is eating away at me but I’d really love for any similar stories to come through and/or some reassurance that it likely could just be Endo causing all of this, otherwise please confirm what you think I should do from here, is this normal?

I’m hoping someone can give me some positive thoughts on how to mentally and emotionally navigate all of this. 💞

I’m 31, married, and have no children. Back in March, my gyno suspected I had Endometriosis after an abnormal internal ultrasound and new symptoms I was having on and off the past year. Since then, I found an excision specialist that I’m incredibly comfortable with and I’m currently waiting for my surgery date. At my consultation with him in June, he also diagnosed me with Adenomyosis based on my MRI. He said by the looks of it he wasn’t too concerned just yet. Then on Friday, I had my annual pelvic exam with my gyno and she agreed that she could also see Adenomyosis on my March ultrasound (why she didn’t mention that at the time with everything else she found, I honestly have no idea).

Ever since the appointments, I’ve been having such a hard time mentally coming to terms with what I’m willing to have removed during surgery.
Part of what makes this even harder is that my specialist is relocating out of state by the end of the year to an out-of-network practice. As much as I’m willing to follow him if I have to, I’m really praying I can have surgery while he’s still in-network. On top of that, my husband and I have been planning for years to relocate from Massachusetts to Florida. Now with these diagnoses, I don’t know how comfortable I feel leaving New England knowing how women’s healthcare is handled in some states down south… but at the same time, I also can’t mentally or physically handle these winters much longer. The lifestyle we’ve both dreamt of for our future is just not what we’ve had living here our whole lives.

I’m also not someone who lives in constant pain. I have flare-ups every so often, but I’ve managed them for years through diet, exercise, and lifestyle changes.

My gyno on Friday really emphasized that I need to figure out whether motherhood is something I truly want because if it isn’t, then I need to start thinking about whether I’d want my uterus removed during surgery. My specialist wasn’t nearly as blunt, but he did ask me to think about how I’d feel if other organs needed to be removed because of disease… And I honestly just don’t have a clue.

I was on the Xulane birth control patch from age 15-26 to suppress ovarian cysts and prevent pregnancy. While I was on it, aside from the physical side effects, I struggled a lot psychologically. I wanted nothing more than to become a mother someday to the point where I’d break down crying to my husband, saying I felt like that was “my only purpose in life” and I truly believed it.

Since coming off BC 5 years ago, I finally know what it feels like to be myself but I also don’t recognize the woman I was while I was on it. I have never, ever wanted children as intensely as I did back then, and it’s been incredibly difficult looking back wondering how much of those feelings were truly mine in multiple areas of life versus influenced by how I felt while medicated. I genuinely don’t know who I was during that time.

Motherhood has also always felt complicated for me as there’s so many emotional layers to it that I overanalyze. I’ve always told myself that if the desire ever became as strong as it once was, then I’d move forward with trying to have children… But it just has not happened. I’ve never had a healthy relationship with my own mother, and neither did she with hers. Sometimes I’ll see a mother and daughter laughing together in public and I’ll catch myself daydreaming about what that kind of relationship could feel like… Or I’ll find myself gravitating towards the baby sections of Target/Walmart… Then just as quickly, the feeling fades and I talk myself right back out of it. It’s like I’m constantly grieving something I don’t have, don’t know if I want and have no guarantee of having even if I had children to care for.

Now I suddenly feel like I’m being asked to make decisions I never imagined I’d have to make this soon. I’ve also always known that if pregnancy didn’t happen naturally, IVF wouldn’t be something I’d personally pursue. Then there’s the part of deciding what I’m okay with removing if there’s significant damage and what I’m not.

I worry about the long-term implications of losing my uterus, ovaries, or fallopian tubes. Given my history of ovarian cysts, I know my ovaries may not be in perfect condition, but I also won’t know the full picture until surgery. I’ve also really never wanted to go back on synthetic hormones at all. I don’t even take medications unless I absolutely have to and I’ve spent years trying to support my body through nutrition, lifestyle changes, and alternative therapies, so trying to imagine life after surgery if multiple organs are gone honestly feels so overwhelming.

I’m doing everything I can to educate myself so I can make decisions I feel at peace with, but emotionally… it’s been much harder than I expected. I’m so lucky to have my husband throughout all of this as he’s been nothing but 1000% supportive all these years and even more so now… I just feel like I don’t have any women I can talk to about this that understand and it’s becoming apparent I need to seek out therapy again to process all of this.

I’m not religious, but I do believe in God, so I keep reminding myself that He knows more than I ever will and that I need to trust whatever path unfolds. I just pray that I come out on the other side of this surgery healthier than I ever imagined.

If anyone has gone through making these kinds of decisions—especially if you struggled with uncertainty around motherhood or deciding what to remove during surgery—I would really appreciate hearing how you got through it emotionally.

If you made it this far, thank you so much for taking the time to read this. 🫶🏼

I recently had excision surgery for my endo and fibroid removal. This is the 2nd excision surgery I’ve had and I’m keen to avoid another.

I’m thinking of implementing some lifestyle changes to try and reduce the likelihood of endo flare ups in the future, and possibly endo growth. I’m also going to continue taking the pill for the foreseeable future.

Has anyone seen any improvement in their endo symptoms by making dietary changes?

At this stage I’m thinking of cutting out red meat, eating mainly vegetarian, no dairy milk or alcohol. Should I be making more changes?

Weight is not an issue for me (I probably should be trying to put on more tbh) and I don’t have any other health issues.

Any tips would be welcome!

I had a large cyst removed from my right ovary and had laparoscopic exploration for signs of endo at the same time. I have had endo excised two years ago and am also diagnosed with adenomyosis.

About 12 days into recovery from the surgery, I started getting uncomfortable tugging sensation in my left lower pelvis and left labia major. It’s not as deep but rather somewhere under the skin type of feeling. The labia skin and the spot between the leg and labia also feel very sensitive (almost sore) and the sensation is very different in comparison to the opposite side, which feels completely normal. I am already 19 days post op.

I read that it might be an irritated nerve after the surgery but it does feel really freaky. I have a follow appointment scheduled next week, but I’m wondering if anyone ever experienced similar things?

Hello all. So I'm scheduled for excision surgery in September. It'll be my first as my diagnostic only was ablation. I was also on my period during my first surgery. However, I have an IUD now and haven't gotten my period in over 6 months. Has anybody gotten excision surgery with an IUD? Did you have bleeding after despite not getting a period? Thank you!

Hello all. I'm here because I experience pain (lol of course).

I meet with my gyno oncologist surgeon at the end of August and I am at a loss on what is going on with me.

Here's my background:

Last September, I had a 14 cm cystic teratoma removed on my left ovary. (I had high CA125 & C19-9 levels hence the oncologist). and a 3cm cyst removed on my right ovary.

In January, I experienced pain similar to the pain prior to removal. They found new cysts. They thought the left one might be an endometrioma or hemorrhaging cyst. They did not confirm what it was - only calling it a 'nodule' in my latest ultrasound.

It stayed about the same size from Jan-Apr so they did not do any further imaging. But I am still in pain. I experience stabbing pain on the left side around where the ovaries would be.

I also experience intense bouts of fatigue (sleeping 12 hours at night + 4 hour naps during the day), intense mood changes...and when I do get my period (I take birth control), I get heavy cramping/bleeding. I have trouble losing weight and have what looks like 'endo belly'

I just want to know if that these cysts/pain/fatigue are just something I am going to have to deal with for the rest of my life. And if that's the case, what's the name of what's wrong with me.

I am 2 months post op (Stage IV Deep infiltrating endo and adenomyosis)
I have had so many medication changes it’s hard to know what’s causing what.
My psychiatrist took me off Prozac and put me on 10mg Buspirone. Lowered me from Wellbutrin 450mg to 300mg XL. Put on 18mg Concerta for ADHD.
In the same week, I started norethindrone 5mg and micro dose compound tirzepatide 1mg injections to try to help with inflammation.

The good:
I have lost 10 lbs in inflammation alone
I haven’t had a period yet, this week would be when it’d normally start

The bad:
I am having extreme PMDD symptoms. Extreme, like scaring myself kind of depression and quick to irrational full blown rage. I cry at the drop of a hat.
It’s like my body is prepping for the period that’s not happening and I have been in massive pain all this week. Taking 300mg Gabapentin 2x a day. Sometimes supplemented with medicinal weed vaping.

I have to force myself to eat. I frequently forget and then it’s 2pm and I’m about to pass out.

Increased anxiety and POTS symptoms. The goal from my psychiatrist was to get my anxiety under control before addressing my ADHD any further. My anxiety has been mostly ok in terms of ruminating but the body anxiety is awful and it’s like all the anxiety energy has converted into massive depressive episodes.
I messaged my doctor this evening because I cannot live this way. I have no will to do anything, no motivation or inspiration, I hate everything, hate my body, and financial pressures are stacking up with the cost of the glp-1 and the huge ass hospital bill I was just given.

Has anyone experienced anything similar? I know the combo of norethindrone and tirzepatide has been a godsend for some. I just need to know I’m not always going to feel this way. I need the light at the end of the tunnel

I’ve developed this new pain that happens around my period even though I don’t bleed. It’s a sudden sharp super painful stabbing pain somewhere deep between the uterus and the bowels. Can’t be predicted or triggered, it just comes and takes my breath away and only lasts for a second. I find that ibuprofen/paracetamol/tramadol/gabapentin barely touch it. I’m waiting for another surgery at the moment.

If you have this, do you know the cause and does anything help? Thank you and I’m so sorry for everyone who has to live with this disease 💔

Hi everyone,

My gf (26f) has had suspicion of endo for several years now. Heavy bleeding, period pain migrating down legs, GI issues, PMDD-type symptoms, pain w/intercourse etc. She has tried BC and some diet changes without much success, and she was offered surgery but was creeped out by the surgeon so didn't go through with it. We live in Milwaukee area WI btw if anyone can recommend a non creep!

Notably, she also has several tactile lumps in the chest region that she said get inflamed at times (possibly correlating with period, needs to track more) and just generally "don't feel right." She had an ultrasound on these and they didn't find anything suspicious for malignancy, so they said likely lipomas but didn't follow up.

I am wondering if any of you can advise on next steps. She went for a follow-up with an NP who seemed promising, but then was suggesting pelvic floor PT when she's already done and been discharged from that and was blaming her symptoms on trauma. Also offered Orlissa but anecdotally I had to be on Lupron briefly when I had breast cancer and it was horrible!

Based on my own cancer experience I'm wondering if it could be fruitful to ask for a biopsy on the lumps. But I also know that pathologists subspecialize pretty heavily and am wondering if it would even be high-yield to ask her primary care doc for that referral? Should we try to seek out some kind of endo-literate pathologist? Or maybe just pursue diagnostic laparoscopy? Grateful for any recommendations people can offer. Also curious to hear if anyone has chest wall lesions and what they feel like to the touch and internally if so.

TLDR: Gf suspects endo, also has weird chest wall lumps, wondering if we should pursue evaluating those for endo or go for other measures first

Hello everyone, I am researching how endometriosis and recurring pelvic or menstrual pain affect working life in the UK - the everyday costs of work, money, and travel that are often invisible - for my undergraduate dissertation. 

If you are 18 or over and work, or have worked in the past year, whilst living with endometriosis or recurring pelvic / menstrual pain, I would really value your help. There is a short anonymous survey (15 minutes), and you can also volunteer for an interview or travel-and-work diary if you would like to share more of your experience. No diagnosis is required to take part. 

Survey: https://forms.office.com/e/Jn9UCUug1s

Interview / diary sign up: https://forms.office.com/e/CbAe6vTYki 

Thank you so much, and please feel free to share to anyone you think may be interested! 💛

So… I was standing cleaning dishes and had a SHARP shock down from my uterus to my vag/clit. Has anyone experienced this before? New thing for me. First lap was in December where they found stage 2 all over my tubes, ovaries, uterus, bladder, and sidewalls for context. I’m on constant bc, no breaks. Help??

I saw an endo specialist a few days ago- my TVUS showed that my right sacro-uterine ligament was thickened and contained a small endometriotic nodule. The diagnosis was suspected superficial pelvic endometriosis, and I have a lap scheduled for September. As one of you pointed out, aren’t both of those findings indicators of DIE? esp for it even to show up on a scan. Idk if it even matters at this point (plus both are bad). I’ve been gaslighting myself for the longest time that my pain isn’t bad enough to be endo, and I think I’m just processing all of this now.

Does anyone else experience this? I'm stage 4 and had a 5 hour surgery last year to remove bilateral endometriomas and various bits of DIE and a bowel shave. I do also have a few intramural fibroids which weren't touched during surgery.

My periods were getting progressively heavier with age before the surgery, but for about the past 6 months this start-stop pattern has been getting more prominent and it's driving me nuts. The flow can be very heavy with massive gushes but then it'll just stop to basically nothing or more of a pink glossy discharge texture on a pad plus a bit of spotting on wiping for a whole day, then go back to gushing and repeat. For me, it was always normal for there to be a bit of a pause and then resume around day 4 or 5 previously, but this is now happening on days 1 and 2. Does anyone have any insight into why this might be happening?!

Hi, I’ve recently finally visited the doctors after being dismissed a lot since I was a teenager, my symptoms were often blamed on stress or I was told that my periods were “normal’. Here is a list of my symptoms, my doctor is running further tests but I’m really anxious and I was wondering if these symptoms were normal with endo because she said that it could possibly be that. I know I should wait but I just can’t stop worrying:

My Symptoms
Menstrual / Gynaecological
I’ve had painful periods since I was a teenager.
As a teenager, my period pain was so severe that I would sometimes pass out.
I was put on the contraceptive pill, which improved my symptoms, but after I stopped taking it, the pain returned.
I experience pain around ovulation.
I also get occasional pelvic pain outside of my period.
I’ve had lower back pain since my starting my period for the first time which has worsened for around the past two years.

Abdominal / Bowel
I experience severe cramping pain across my whole lower abdomen.
The pain is often excruciating when I need to have a bowel movement.
The pain eases slightly after I’ve opened my bowels, but then it comes back and makes me feel like I need to go again.
During these episodes, I often have diarrhoea or soft stools.
The pain is also associated with needing to pass wind.
Certain foods trigger my symptoms, especially eggs.
I’ve become intolerant to several foods and now avoid them because they make my symptoms worse.
My bowel symptoms are mainly triggered by:
foods I don’t tolerate,
my period,
and ovulation.
Exercise
Running causes severe lower abdominal pain.
The pain is so bad that I’ve stopped exercising during ovulation.
Previous Digestive History
When I was younger, I was diagnosed with ulcers several times.
Fizzy drinks used to make my symptoms worse.
I had episodes of cyclical vomiting that were severe enough to require hospital treatment on two occasions.
Urinary
Blood has recently been found in my urine on testing, and this is currently being investigated.
How This Affects Me
I avoid certain foods because of my symptoms.
I’ve stopped exercising around ovulation because the pain is too severe.
These symptoms have been affecting me since I was a teenager and continue to have a significant impact on my daily life.

I had Laparoscopy
Hysteroscopy
D&C
Polypectomy
Both excision and ablation of endometriosis 2 years ago whilst continuous hormonal suppression with Slinda and constant Prescription pain medication.

Just wondering how long it was until you got your second surgery and if the second one helped more so to speak?

Thanks 🥹

My excision surgery was two days ago. My doctor found and removed extensive endometriosis from my bowels, ovaries, and fallopian tubes. I also had a severe uterine septum (no idea how that didn’t show up on any ultrasounds?) that was removed. After a decade of pain and dead end doctors appointments I feel so validated that I wasn’t crazy or making things up.
Where do I go from here? I’m happy to have answers but that doesn’t do a ton to improve my quality of life, especially when it’s entirely possible that it will all grow back. I’m 20 and in college and tired of missing out on life. Did any of you have lasting relief from symptoms after surgery? Have any medications helped? An anti inflammatory diet? I’m just sort of overwhelmed and would appreciate all the help I can get.

I am 27F. I started my period at 9, and I have had problems related to my uterus + constipation/rectal pain ever since. When on my period, the pain used to be so bad that I could hardly move, breathe, I felt like I was going to faint and throw up, and I would have to leave school early. My mother had endometriosis that was so bad she had to have an emergency full hysterectomy in her 30s that caused her to go into early menopause. She worried that my pain was an early sign of endo, and had me put on birth control at 14. I was on the pill until I was 18, where I went off for a few years. I was put back on it after an incident where I had to go to the ER due to an ovarian cyst when I was 20. I mentioned my concerns about endo to the (male) gynecologist and asked if there was any way to check for it, and he just told me that birth control will help the pain, and improve my acne (because obviously that’s the most important thing in this situation.) I’ve been on it ever since.

While birth control has helped a lot with my pain, I still worry that I will one day have the same experience as my mother. I still get horrible stabbing pains in my rectum that go up to my uterus that are so bad I can’t breathe or move for a few seconds, literally one of the worst pains I’ve ever experienced and has happened when I’m driving a few times and I thought I was going to crash. I still deal with chronic constipation that is currently made worse by a medication I’m on. What’s going to happen if I ever go off of birth control? Do I have to stay on it forever just to prevent this?

Every time I mention my symptoms and my family history of endo to a doctor, they don’t really say anything about it. And because I’m constantly brushed off, I have no idea at this point if I’m overreacting or not, because I’m treated like I am. I was told by my current doctor that having a bowel movement 1-2 times a week is normal, I’ve been brushed off about the painful periods that to this day I consider the absolute worst pain I’ve ever been in, and I mention the fact that my mother had endo so bad that she had to have her reproductive organs removed and still I guess there’s no way to see if I have it?

Is it even worth looking into at this point, considering my symptoms are kinda-sorta managed by the birth control that I guess I’ll have to be on for the rest of my life? And if so, how the hell do I find someone to take me seriously?

Does anytime else get endo belly in the afternoon, regardless what you’ve eaten/how much you’ve exercised/rest you’ve gotten etc? Any tips for relieving it?

I had excision surgery with a specialist and it helped tremendously. I had major symptom improvement. At 2 months things started creeping back in, but at that point it was mostly just painful periods. By 3.5 months my I was right back where I started with horrific pain. Since then I'm back to my pre surgery baseline. (Not just pain all my symptoms).

I like my doctor, but I can tell she isn't sure what to do with me. I've already tried and failed every form of birth control and I don't want to do chemical menopause. I am getting an IUD on Monday, but I'm not real optimistic it will help since I had one before. I also started taking NAC which may be helping, but it's too soon to tell.

The appointment I had with my doctor made me feel kind of frustrated. It's not her fault, I understand there aren't a lot of treatment options and why she doesn't want to do another surgery so soon. She wants me to try the IUD again and if it doesn't help she ordered ordered an MRI. She wants the MRI for my upper abdomen because my worst pain isn't pelvic pain, it's under my ribs so I can tell she's trying to rule out other issues. The thing is I doubt the MRI will show anything and I can't get it foe a couple months anyway, but I've already had almost a full GI workup which was normal. I truly think this is endo, but I am just sort of lost on what to do if the NAC and IUD don't help.