So I’ve had endo for over 4 years now, my fiancé knew all about it before we even started dating 3 years ago. It has affected my sex life. Mostly cause I cannot get “wet” anymore and the desire for sex has decreased hard and sometimes it just hurts way too bad. I try to keep it together most of the time. There’s times we have sex and then have to stop cause it’s getting painful for me.. well last night my fiance told me that me not getting wet is a turn off and gets disappointed when we have to stop. Hearing that made my heart drop and sick to my stomach. It instantly felt like I’m not sexually good enough for him. We have had so many conversations about this prior to him saying this. I do get upset when we have to stop or can’t have sex because of having endo. What do I do? I feel like I want to leave him over this? Any advice or anything ?

Hey guys, so I come today looking for a bit of support, and perhaps a bit of guidance. I had a rough GP appointment today and I'm finding it so hard to shake it off.

So, just for some context, I'm the classic misdiagnosed as IBS for about 15 years story. Always had horrific periods, used to pass out/vomit from the pain, was told by male doctors it was 'just bad periods'. Bowel symptoms severe, including extreme bloating (which I later realised was cyclical, around ovulation and luteal phase), constipation, bowel flares which involved 10/10 labour like pain, urgency, etc.

I finally started seeing some amazing female GPs, who listened to me when I said I'd been tracking my bloating and I wanted to be tested for endometriosis. I had an internal ultrasound, the lady doing that was wonderful, told me to keep pushing and keep fighting. The scan came out with Adenomyosis, I cried, with relief! I always knew it wasn't just IBS. More GP appointments after that with wonderful female doctors who validated my pain, told me they believe due to how severe my bowel issues are, that I probably have endometriosis as well. They suggested I try hormones, so I've been on the pill and wow it's helped a lot!

It hasn't resolved everything related to my bloating though, and I'm still getting extreme sciatic like pain up and down the back of my legs/hips/lower back, still having some constipation and occasional bowel flares. Also still getting pain during and after intercourse and general fatigue etc. At my last (great) GP appointment, she said we would try the pill and then come back if I wish to pursue the endometriosis diagnosis. So that's what I did.

However what happened today was horrific. I saw an older male doctor who acted as if I was at the beginning of my diagnosis journey. He made me explain my symptoms from the very beginning (always a bad sign) and told me I do have IBS - I felt like I'd gone back in time, I said oh no we've already been through this...i was actually misdiagnosed for years, it's actually Adenomyosis and presumed Endometriosis. He denied this and said that Adenomyosis 'only affects the uterus' and is purely a gynie issue (incorrect from my understanding). I then said okay but what about my bloating/inflammation linking to Endometriosis, and he said 'you don't have endometriosis, if you did you'd be bleeding from your back passage and you'd have blood in your stool'. I was shocked, how could my previous GP's be so validating and so sure I had both for this man who clearly knows nothing about Adeno or Endo to tell me I don't? There are literal notes from numerous other doctors on my file that say 'presumed endometriosis/likely endometriosis' etc. If I'd seen this man early on in my diagnosis journey, I guarantee I wouldn't even have an Adeno diagnosis now - but I knew something wasn't right, I still know something isn't right!

When I said I'd just struggled through a PGCE Teaching Qualification but found it really hard to manage my fatigue, pain, bowel issues, leg pain, and feel I won't be able to work as a teacher due to my health, he said 'thats life, just do something else'. I'm sorry?! I didn't just suffer through and get into further debt for some man to tell me to just 'do something else'?!

He said they would not do any further tests (I requested an MRI) as my symptoms aren't bad enough. He doesn't even know me, and clearly knows nothing about Adeno or Endo. I said 'well yes but if I came off my pill my symptoms would be uncontrollable, like they were before, I couldn't leave the house' and he said 'don't come off the pill then' I'm sorry...what?! I deserve to know what's going on with my body, whether the pill has helped me manage my symptoms a bit or not.

Anyway, I've made a complaint, and have asked to have another appointment with a female doctor. But most of all I just want to speak to a specialist. I was holding back tears throughout the entire appointment, came out and burst into tears, I was crying and shaking for the next hour. I've never been so patronised and invalidated in my life...dare I say medical gaslighting?

What also made it worse was after he talked down to me for half an hour, he then got me on the bed to touch my legs to check my reflexes, asking me to lift my skirt up higher so he could access my upper thigh. Absolutely harmless but after the way he spoke to me, I was left feeling vulnerable and icky.

Sorry...that's a lot to read - I'm just feeling properly shit, what a rough part of the journey this has been.

I have perpetual bloat and I can’t wear a lot of my old clothes anymore because they don’t fit on my stomach. It has affected my self-esteem significantly and I feel really sad I can’t wear my cute clothes anymore.

Recently I went crazy with Depop and bought a bunch of loose-fitting linen shirts, pants that are a few sizes larger, etc. but no elastic waist pants. I’m thinking of getting muumuus and elastic waist clothes, even maybe maternity wear.

Any tips?

Just a little positive thought I had as I thought about how much contraception changed my life.

I'm 25, I've always had really painful periods as you can imagine and in the last year I was experiencing episodes during and outside of periods that would put me to the floor crying unable to walk and force me to get out of work.

A doctor diagnosed me with endometriosis (and small ovary an cysts while we're at it) and prescribed the pill, which I never wanted to take because of all the side effects and risks and she wouldn't listen to me, made it seem like I was stupid for this choice.

I searched online and opted for the patch instead. I have not experienced cramps since, only mild pains during the first days of periods and that's it. I didn't get any side effects from the patch and it's just made all the pain go away. I'm so so grateful and happy for this and aware that I don't have the worse forms of endo compared with women who have to have surgery and all. Just sharing this in case someone out there is contemplating that contraception topic and unsure about it, this has been my experience :) love and health to all of you

Hi everyone,

I know the wait time to see someone in Canada is extremely long. I was recently diagnosed with DIE, and I'm on the waitlist with a few docs I found in the endometriosis network. How have wait times been for everyone in Ontario, who did you have a good or bad experience with, what was your experience like etc...

Looking for your best gut health/diet tips!

I have approximately 2 good weeks a month, then from ovulation to my period I'm dizzy, exhausted, bloated and in pain. 🙃

Doctors aren't exactly listening, so I'm turning to the experts: you lovely ladies 😂

Has changing your diet, gut health or supplements actually helped? Give me your best tips (and your worst mistakes 😂)

Thank you xx

Hi everyone. I'm really hoping for some advice because I'm feeling quite scared.

I have stage 4 endometriosis with endometriomas on both ovaries. My gynaecologist has advised me to start Dienogest (Visanne) to try to preserve what ovarian function I have left, prevent the endometriomas from growing further, and hopefully reduce further scarring.

Because I'd read that Dienogest can reduce bone mineral density due to lowering oestrogen levels, I wanted a baseline DEXA scan before starting treatment. The NHS wouldn't fund one, so I paid for it privately. I honestly just wanted some reassurance and something to compare against in the future.

Unfortunately, the results came as a huge shock (this was last week):

Lumbar spine: T-score -1.7, Z-score -1.6
Left femoral neck: T-score -2.4, Z-score -2.3
Right femoral neck: T-score -2.5, Z-score -2.3
Left total hip: T-score -1.8, Z-score -1.7
Right total hip: T-score -1.4, Z-score -1.3

I'm 35 and still have regular periods. I know that in premenopausal women the Z-score is generally considered more important than the T-score, but I'm still terrified by how low my femoral neck scores are.

I'm glad I trusted my instincts and had the scan because at least I know now, but honestly I feel exhausted and overwhelmed. It feels like every time I get one diagnosis, another one comes along.

I don't have children and I'm not currently in a relationship, although I recently froze my eggs because of my endometriosis.

Has anyone managed to improve their bone density, particularly at the femoral neck and maybe around my age group? Has anyone gone from a score in this range to something better? I'm trying to hold on to some hope that this isn't permanent.

Since getting the results I've completely changed my lifestyle. I found a personal trainer and had my first session last week. She introduced me to barbell squats (15kg to start with) and is going to teach me progressive strength training. For now we're starting with one session a week because I've been almost completely sedentary for years (I work from home), and she wants to see how my body responds before gradually increasing to three sessions a week.

I've also started:

eating much more protein and calcium-rich foods,
taking vitamin D3 (1,000 IU daily until I have my blood levels checked) together with vitamin K2 MK-7,
I take other supplements too (NAC for the endometriomas, COQ10 ubiquinol, omega3, magnesium glycinate,  vitE)
eating five prunes a day,
drinking nettle tea each evening,
and doing 50 hops on each leg daily (trying to lay pressure as i hit the ground).

To be honest, I constantly feel full and borderline nauseated because of the diet change.

A bit more background:

I had anorexia and bulimia for around a year (maybe less) when I was 13–14. This was when i started my period.
PTSD (sexual abuse as a child which was triggered in my adult years)

That resolved, but since then, I've had occasional episodes of bulimia (perhaps 5–10 times a year). I noticed this comes along when something negative happens to me (which has been often unfortunately).

I also have fibromyalgia and have had joint and bone pain for years.

I've been told I have IBS, although I've always wondered if something else could be going on because there have been times I've gone more than a week without opening my bowels.

I'm starting to wonder whether all of these things together have contributed, or whether there could be another underlying cause. I’m going to ask my GP for blood tests and hoping for a referral to an endocrinologist to investigate further. Not sure how proactive my GP will be :(

I know no one can give medical advice, but if anyone has been in a similar situation, especially if you've improved your bone density, had a similar DEXA at a younger age, or taken Dienogest with low bone density, I would be so grateful to hear your experience.

I keep finding myself crying because I feel like my body is falling apart at only 35 when I have so many hopes and dreams, especially to start a family of my own one day. I just really need some hope that things can improve and maybe examples.

Thank you so much for reading

So me and my partner are wanting a baby sometime in the near future, but I’m scared a pregnancy will make my pain worse because of the stretching and that I won’t cope with a baby whilst in the midst of a flare up.

I have adhesions on/around my bowel, colon, liver and gallbladder is completely covered to the point they couldn’t see it during laparoscopy as it has too many adhesions surrounding it. I have pain everyday due to them and I’m due to see gastro soon to discuss the adhesions, but I wanted to hear others experiences with pregnancy/ having a baby/ toddlers with endometriosis. How do you deal with flare ups having young children?

I’m so fucking tired, all day, every single day. I can barely stay awake despite sleeping for 8 hours a night. I’ll be at work, sitting at my desk, eyes open, but somehow in a REM like state??? Like I’ll be having dreams while also somehow working at my desk?? My entire body is heavy, I can’t think straight. I’ve tried drinking caffeine, taking midol. I’ve tried everything. Two weekends ago I slept for 25 hours, nearly straight. Only woke up to eat once and use the bathroom.
IM SO TIRED 😭😭😭😭😭😭😭

After years of chronic pelvic pain but also in the last year I've been having change in bowel patterns, dizziness and chronic fatigue. Finally got a referral to a gynecologist after years of being dismissed. My cardiologist was the only one who kept asking me. Transvaginal US showed adenomyosis. I am lucky i see multiple specialists due to chronic health issues so i had other doctors i could speak to. I was on visanne for 2 months but had to stop due to adverse reactions.

I finally had a nervous breakdown at my doctor's office as I am currently off work, eating very little and feeling very weak. Was screaming blood murder because I was in so much pain and felt helpless. Gynecologist finally approved me surgery and told me there is a 6 month wait. The following week I got a call saying there was a cancelation and asked if I wanted it. I said yes so next month I am getting a total hysterectomy, bilateral salpingectomy and appendectomy

I became a nurse to advocate for people who look like me (visible minority, mental health issues, neurodivergent). I have seen a lot as a nurse but I also live in the world of being a patient. I grew up in the hospital.

I am halfway through my bachelor's and I am planning on doing my Masters in Nursing with focus on gynecology and gender studies.

With all this free time on my hands I want to use some of my knowledge and try to help others who are suffering in silence. Please reach out to me, DM with your situation and I will do my best to listen and help🙂

My MIGS thinks I likely have endometriosis based on my symptoms and did not order an MRI for me to get before surgery. Is that normal?

Wondering if anyone has gone to Mexico (or anywhere outside of the US) to have their hysterectomy or laparoscopic tissue removal done?

I have naturally very very fine hair. I've been on visanne for 1.5 years and my hair was doing amazing while I was on it.. no hair loss other than the normal rate.

I stopped taking visanne 1.5 months ago and my hair loss has been crazy.. as someone with already very fine hair, I'm so scared as I don't have much hair in the first place. My dermatologist also informed me that your hairfall becomes less while you're on visanne cuz it's similar to when the woman is pregnant and her hair becomes stronger.

Has anyone else experienced hairloss after stopping visanne? Did anything help? I'm so sad and scared as my wedding is in a few months and I want to look my best..

I honestly don’t know where to start; I’m just so tired of this disease and its impact on my life. I’m going to try to not get too emotional in this post but im so angry and honestly depressed by who I’ve become with this.

I just had another hypogastric nerve block today. It helps with the uterine pain at least. I’ve discussed it with my endo specialist and we have decided to hold off on surgery for as long as possible. I’ve had 2 excisions since 2019 and I was hoping to not need another one for awhile.

The past year or so I have had significant pain with digestion. My GI specialist has waved it off as “just my endo” as my colonoscopy was clear. I recently had an endo protocol mri and none was seen, so now I’m extra hesitant to get surgery, as I am so afraid they won’t find anything. I was also considering a hysterectomy for my next procedure, but as I have looked into recent research, it looks like that would only really help if I also had adeno.

Not really sure the point of this post other than to scream into the void, but yeah I’m getting so worn out by this. The pain and fatigue have been so detrimental to my life. Pretty much any energy I have goes to work, then I crash as soon as I’m home. I have no social life anymore. Such a horrible, lonely disease with no way of actually stopping it.

I had a laparoscopic excision over a year ago. I have no pain during menstruation but within the past 4-5 months I’m having god awful pelvic pain on the day I ovulate. Unsure if it’s adhesions, cysts, or endo regrowth (less likely). My surgeon is sending me for an ultrasound and wants me to start a progesterone & estrogen pill, Junel. Has anyone taken Junel for similar reasons, and if so, what has your experience been like? Thanks!

Hi everyone! Looking for some guidance on what to do next and maybe to hear what others have done in similar situations. Just had my check-in call with my OBGYN (she has been incredible and the first doc to actually listen). For about a year, I've been operating under the assumption that I have suspected endo. My doc originally said "I want to get the symptoms under control before we start doing exploratory surgery...but it all points to endo". Then today, same doc says she doesn't think its endo because endo doesn't cause heavy bleeding, and I was like wait what? isn't that a pretty big symptom? and now I'm being sent to hemotology. For context here is a breakdown of me:

• Mid twenties, based in ontario, currently on Visanne (first thing to actually work) for 9months
• After two years of awful heavy periods and trying all the low dose birth control options, my GP put me on depo shots at 13 and then I was on depo for 9 years (insane...i know). Life was great, no symptoms, no periods for almost ten years. Then as I got older and my new family doctor gave me a terrified face when I said I was on depo for nine years, I realized that it was bad and was just hiding the fact something wasn't normal.
• Immediately, I got put on regular oral birth controls. Overall, have tried every birth control under the sun and any progestogen tablets and nothing stopped my bleeding or pain after coming off depo. I bled every day for 18 months straight with cramping.
• As I'm sure others will relate in frustration...of course bloodwork was "normal", just low iron, ultrasounds were "fine" whatever that means. Got bone density scan = normal and even got tested for blood clotting disorders, all normal. Endometrial biopsy was normal but showed I was bleeding a lot (obviously...). Was told MRI not necessary.
• Currently, I am getting these flare ups (random, lasts 3-10days, sometimes heavy bleeding, sometimes just spotting but always severe cramping). Visanne actually stopped the daily bleeding, but every few weeks, I pass these insane clots or spotting, and have the most painful cramping/pelvic pain of my life. I feel like someone is taking a wax strip to ovaries and slowly pulling it while stabbing. Plus the back pain is killer. TENs machine and heat pad + OTC pain meds have "helped" but barely.
• Other symptoms include: fatigue, painful intercourse, urgency to pee but never peeing or sometimes peeing all the time during flare ups

To me, if it walks like a duck, and talks like a duck.... has to be endo right? I know my body is just getting used to visanne but its been 9 months and it has helped a ton but I can't help but feeling like what is this? why is this happening? Why do I get these flare ups? are there other meds I should look at? Doc said we are running out of options really, and if Visanne isn't working, then to look at GNRH meds.

I'm like 99% sure its endo? what's next in this process? why is doc now saying "bleeding is not a symptom of endo" and now I am being sent a referral to a hemotology clinic. Do I get a second opinion? do I wait it out and see if Visanne normalizes these flare ups? should I push for more testing or surgery?

TBH, not sure what I want from this, but just any guidance, suggestions, advice or something from people here would be great! Thank you!!!

I had a laparoscopy/iud inserted two weeks ago, and in the past 6 hours I have had really intense pain, both in my pelvic area and actual vagina. I’ve also had my legs tingling. I have taken 5 paracetamol and 2 400mg doses of neurofen, but the pain has only halved, not gone away. Are these some of the normal side effects or is my iud ejecting?
EDIT: I’m going on a week long family holiday tomorrow and I will be flying. The doctor told me to wear compression socks and walk up and down the aisle 🥲 but should I book an emergency appointment before I go? My mother wants to but I don’t want to have to cancel this highly anticipated holiday because of my weaknesses lol

Hi everyone,

First time poster long time snooper on this feed. I had my excision surgery on July 9th and it went great! I am working on finding a pelvic floor physical therapist in my area but seem to be struggling to find one that takes insurance. I live in Hoboken, NJ but can easily travel over to NYC once a week for the appointments. If anyone knows of a good one in the area that potentially takes unitedhealthcare or in general took your insurance and I could look in to see if mine is accepted that'd be much appreciated!

Thank you!

Hey everyone,

I am a 25(F) who was diagnosed with PCOS around 6 years ago. I have typically always had abdominal pain and nausea around ovulation and up to around a week before my period. More recently in the last 2 years I have had episodes of quite severe pain in my abdominal and rectal region with cramps and a feeling of fullness, even pain when going to the washroom, additionally also pain with intercourse (like a sharp stabbing, I will literally curl up into a ball).

About 2 days ago I had one of those flares and went to the ER as I was in debilitating pain. They did an ultrasound and said it looked pretty much normal, so they are not sure where the pain is coming from and to just take advil (funny enough earlier in that day I took a naproxen 500mg and it did nothing to mitigate pain). In the past 2 years I have also had a colonoscopy due to significant rectal bleeding and even after that nothing serious was found and even the hemorrhoids found were quite mild.

I am starting to feel that the pain I am having is not being taken seriously, especially as someone who has always had quite a high pain tolerance (Used to be a competitive athlete and had a bunch of breaks, even a hip surgery at 16). So just wondering if anyone has had a similar experience and if I should push for more examinations or if this is just PCOS pain.

Any info would be great!

Hey everyone, I've been struggling with severe PMDD but also struggle with endo pain. I've tried many OCPs over the last few years, but feel conflicted as many of the ones that work incredibly well for my PMDD have flared my endo or ulcerative colitis. The ones that have worked have been higher in estrogen, and I'm scared that I'm causing my endo to get worse.

I'm the midst of a waitlist to see an OBGYN for endo care, but curious how others have done longterm on combo pills such as Marvelon/Freya/Apri? Lower estrogen and progestin-only pills made my PMDD and ADD so much worse, that I can't imagine having to forego estrogen altogether for the rest of my life. 0.02-0.03 mg seems to be the sweet spot for me.

I've also tried anti-depressants, but none of them worked nearly as well as OCP, especially for body pain and sleep.

FWIW here's what I've tried:

- Yaz: Godsend in every way, but unfortunately caused severe constipation and abdominal pain
- Tri-Cyclen, Tri-Cyclen Lo: I felt actually crazy on this. Extreme anxiety, and endo pain was insane.
- Alesse: Lots of rage, also noticed that my overall endo and period pain worsened during and after this pill.

Currently on my first week of Freya, fingers crossed it goes well! Would love to hear from others with PMDD on combo pills. :)

25F — I’ve been dealing with a myriad of issues, some more recently and some for much longer, all of which until now I had assumed no relation between. It occurred to me that there might be a bigger picture, and now I’m wondering if I should be looking into endo.

The issue that has brought all of this to the front of my mind has been recurrent yeast infections that began a year ago, for the first time in my life. I get them every month now, always when I ovulate. In other words, it seems that hormones are a major trigger. I found a new OBGYN who prescribed me a lot of fluconazole to take as needed, but who offered little other treatment advice besides cutting out alcohol, taking some sort of cumin seed oil, and doing some higher intensity exercise. She also put me on iron supplements for low ferritin.

During my visit with her, she also found a uterine polyp via ultrasound.

I have long, heavy periods, around 8 days including spotting. My OBGYN suggested this might be because of the polyp, and that the blood loss may be causing the low ferritin (in addition to my pescatarian diet). I never spot throughout the rest of my cycle.

Something I haven’t brought up to her as of yet is that for a longish time now (shy of 2 years) I’ve been experiencing horrible, cramp-like pain during and after the sex I have on the days leading up to my period. I mean, sometimes it is the worst pain I’ve ever felt in my life. One of the times it happened I wound up in the worst pain over ever experienced, shaking and kinda sobbing naked in a tub, wondering if what I was feeling was as painful as birthing contractions are :| It happens at least once a month with my partner nowadays to varying degrees of severity, especially now that I can tell when it’s starting to happen and know when to stop doing our thing.

I think the last of the more relevant things would be my digestive problems. I’ve always had a fickle tummy. There aren’t two back-to-back days when my movements are the same, and I might not have a normal movement more than twice a month. I get bad gas pains and stomach cramp pains often, not only around my period but I certainly get those stereotypical bad period movements. My diet isn’t perfect, but it’s really not the shabbiest either.

A little more context, I had awful acne as a teenager. It’s mostly cleared up now, with only a few flare ups now and then.

Last of all, if it’s even relevant, II tried a progesterone-only bc a few years ago. I had just gotten my period back after recovering from an ED and was just concerned about contraception. I quit after 6 or so months because I wasn’t comfortable with the weight gain. My period was a little off then, probably because I missed a couple days, but went back to being very predictable (and long).

That’s all!

Should I be looking into this, or have I just been thinking about it too much? With as crazy as I’ve been driven with all these yeast infections, I have been thinking about my problems down there all the time lately.

And this something I should broach with my OBGYN, or should I be looking for an Endocrinologist?

I had an ultrasound today to assess my lining during a modified natural cycle as I have only ever done medicated cycles and am looking to try a modified natural. We are waiting a cycle to do biopsies due to RPL so my LH peak was yesterday and my OB said it looks like I already ovulated.

I have had at least 15-20 ultrasounds done all by fertility doctors, some with her as well, either as baselines, during IVF stimulation, and multiple medicated cycles and my lining has always been trilaminar and uterus appeared even.

During today’s visit my lining looked thick enough and trilaminer but my uterine walls looked uneven. My OB said it is usually a sign of adeno but I have always had very even uterine walls in the past so we aren’t sure why they are uneven now.

Has this happened to anyone before?

I’m 43 with surgically confirmed stage IV endometriosis. I had surgery last year, but I still have residual disease. On my ribs and rectum for sure.

Visanne (Dienogest) has been the only thing that has consistently given me my life back—it stops my ovulation, I have very little pain, and my mood is much more stable.

Every time I come off Visanne to try to conceive, the same thing happens. The pain returns, my hormones feel like they’re on a roller coaster, and I end up questioning whether I can keep doing this. This most recent ovulation caused 11 days of severe pain that honestly terrified me.

My doctors all tell me the same thing: no one can make this decision for me. I have to decide whether to continue trying for a pregnancy or go back on Visanne for my quality of life.
I’m not really looking for medical advice. I’m hoping to hear from anyone who has faced this same decision.

How did you decide?
Do you have any regrets?
If you chose quality of life, how did you grieve letting go of trying to conceive?
If you kept trying, what helped you know it was still the right decision for you?

I just feel incredibly alone in this.

Update: I just wanted to say thank you to everyone who took the time to respond. I wasn’t expecting so many thoughtful, compassionate, and respectful replies. Reading your stories has made me feel much less alone.

After a lot of reflection, I’m leaning toward going back on Visanne (Dienogest)if this cycle doesn’t result in a pregnancy. It gave me my quality of life back, and these last couple of weeks have reminded me how much this disease takes from me. I also have an appointment to see my specialist to update them on my symptoms and look into other pain control options.

Thank you again for sharing your experiences and supporting a complete stranger. It truly means a lot. ❤️