Last year completely changed my life.

I was diagnosed with early-stage uterine cancer, and during surgery, I also discovered that I had stage 4 endometriosis. My left ovary and fallopian tubes were removed.

I honestly don't know how to describe the pain I lived with before surgery. It wasn't just physical pain; it affected my everyday life in ways that are difficult to explain to someone who hasn't experienced it.

After surgery, I started taking dienogest. I experienced weight gain, but eventually, something incredible happened: I had zero pain.

More recently, my doctor switched me to Slynd, and so far, it's been a much better experience for me.

After years of living with pain, realizing that I could finally go through my days without it felt life-changing. I don't think people always understand how much chronic pain can take away from your life until you finally experience relief.

Now, I'm curious about other people's experiences.

For those living with stage 4 endometriosis:

• Did surgery change your life, or did you continue to struggle with pain afterward?
• Has anyone switched from dienogest to Slynd? What differences did you notice, especially with weight and pain?
• After years of pain, what was the biggest change you noticed when you finally found something that worked for you?

I'd genuinely love to hear your stories. Sometimes, hearing from someone who understands can mean more than any explanation. ❤️

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 treatment.

Is this true? I can’t find anything on the internet about laparoscopies no longer being standard for 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.

This is an unexpected one.

Researchers have modified niclosamide, a drug traditionally used to treat tapeworm infections, to target inflammation associated with endometriosis.

In a recent mouse study, the experimental treatment reduced endometriotic lesions and improved pain-related outcomes.

What's particularly interesting is that researchers are exploring a potential non-hormonal approach to treating the condition.

Important caveat: This is very early research. The treatment hasn't been shown to work in humans, and there's still a long way to go before it could become a treatment option.

Still, with so many people struggling to find effective relief, it's encouraging to see researchers exploring different approaches.

Original study: https://doi.org/10.1002/adhm.71661

https://www.livescience.com/health/reproductive-health/tapeworm-drug-could-help-treat-endometriosis-mouse-study-hints

I just wanted to share my journey so far with progesterone

The reason I was prescribed progesterone actually had nothing to do with (or so I thought) endometriosis.

My OB prescribed it to me because I have consistently had 20 day cycles for about a year now, which you all might understand is torture with period pain, ovulation pain, cysts, and hormonal fluctuations. Pretty brutal to never get a day off. So anyway, I am to be taking it 2 days post ovulation for 14 days or until my period starts naturally, which it doesn't.

Well ive been on it for about 3 cycles and it has been amaze balls at extending my cycle to 28 days due to the fact that my period does not start until I pause the pills.

I have also noticed the following

-fuller boobs, however they are tender as f while im taking it the WHOLE TIME

-wayyyy more stable mood. I felt bad people were walking on eggshells before, but now I feel like myself again

-eliminated all my hotflashes which were pretty much constant

-acne. A lotttt of acne, not sure if this is due to the change or the progesterone itself but definite downside.

-better focus

That's all of it so far, just sharing and curious what everybody else's experience is. I dont yet know if it will slow the endo or help with the cyst until I reevaluate at my appt in december. But so far period pain is more tolerable!

Thanks for reading :)

Two days ago I went in for my ultrasound and I drank 1.5 litres of water an hour before my appointment. I was uncomfortable and really needed to pee so I assumed I had drank enough water but the doctor sent me home due to my bladder not being full enough.

Does anyone have any tips on how to avoid this next time? I dont want to go back to my next appointment just to be turned away again.

​

Hi everyone :) I've been offered gnhr analog injections (prostap or zoladex)with hrt add-on by the NHS. I'm quite worried about the list of side effects though!

I've been offered this because I'm still in debilitating pain after a laparoscopy in June, and switching to the mirena coil. Endo was found and excised , but I only have a very small amount of lesions causing a lot of pain. My consultant said this is the most difficult kind to treat because there's very little to remove :(

I'm 26, taking codeine and mefenamic acid most days. I can't work at all, I can barely study and I can't walk a lot of the time.

So, should I try prostap or zoladex? I'm very concerned about prostap having read up on leuprolide acetate, the potential for long term side effects and it's impacts on bone health. I thought I could maybe request going to a pain clinic for chronic pain management, try naproxen and/or diogestin before I go for the injections.

My consultant was very nice and said to have a research before I decided. I'm quite scared by this decision, so I'd love to hear of any experiences with gnhr or other treatments you did instead! Thank you 💕

I'm 17 years old and got my first period at 11. Since I think 13, I got very bad period cramps and they've been worsening. I can't go to school or even attend my online tutorings or go out with my family or friends anymore. I got an ultrasound for cysts and a complete blood test done, everything came back normal. Doctors tell me I "just have a low pain tolerance" and that it's completely normal, or that it'll decrease when I'm older and I'm just overreacting. I soak through my clothes and the pain is so bad I can't get out of bed to change the pad. My mattress is relatively new but you'd think it's a hand me down from my grandmother from all the stains because I simply can't get up to change my pad from the pain. My mother who's a doctor and has seen me unable to get off the ground l begging her to get me my medicine and heat messager thinks nothing is wrong, and my sister who's also a doctor gets mad at me for even taking pain meds. The woman who did my ultrasound (granted she seemed a bit stupid) said my endometrial layer seemed thicker than the regular and put me on progesterone to induce a period of sorts. It didn't do anything and I think it made things worse. I've had suicidal thoughts over the pain (I'm not currently at risk of harming myself dw) and honestly if this is truly normal I just wanna get rid of my uterus because I just can't do this for who knows how much longer till menopause or "the pain decreases as I get older". I get numb from the pain meds and just sit lifelessly sometimes and I hate it so much

An argument I've had used against me is that the pain of the cramps seems inconsistent, that sometimes it only happens for a day or two and then it's normal, sometimes a period skips the pain all together. But right now I'm on my period and the pain and bleeding is so long and consistent even I thought it'd end by now. I had cramps 2 weeks leading up to my period even which isn't new to me. I just refuse to believe that just because my pain is sometimes short lived that means everything's normal.

I convinced my mother to take me to a gynecologist despite her thinking nothing is wrong and my appointment is in less than a week. What can I do to make them believe me? I don't care if it's not endometriosis but I just want an answer as to what's going on

Hi all, i feel like everyone knows that PCOS is often also joined with insulin resistance. Why do doctors not talk about it becoming common with endometriosis😢 i have endometriosis and have developed insulin resistance and hyperthyroidism and have been on meds for awhile now . Nobody ever told me its possible and can occur.

I've been on Ryeqo for 2,5 years now, completely asymptomatic and haven't bled a single drop. I'm currently going through an incredibly stressful time, and for the first time since starting Ryeqo I'm experiencing brown spotting and minor cramps.

I know that stress can have an effect on hormonal cycles, and I remember once missing a period altogether due to stress. I'm just wondering (before I contact my gyno) if anyone else has experienced similar while taking Ryeqo?

I am so tired of having to keep clothes in 3 sizes because of the Endo belly. Nothing looks right, I might as well just throw away all of my jeans and dressy shirts and I can forget about wearing anything fitted. What are your wardrobe staples?

Am I stuck wearing ponchos and leggings and peplum tops? I'm seriously at a loss...

Hi! just wondering if anyone has had a similar experience to me-

I stopped taking Dienogest two months ago after spending just three months on it, it made my mental health absolutely awful, and increased all of my chronic pain as well as making me bleed twice a month. I am a year post laparoscopy which unfortunately hasn’t changed much for me.

Since stopping taking it, I have had two periods. I’m quite lucky that despite my endo, my actual bleeding has never been that heavy, and usually I have two days of very bad cramps, and then another two of lighter, pain free bleeding.

both periods since stopping, I have had two days of light bleeding and minor cramps, and then on day three my period has suddenly got *extremely* heavy, to the point that even with tranaxemic acid I am bleeding through pads/period pants. it’s accompanied by pretty severe cramping and nausea to the point that yesterday, I vomited my food after only a couple of bites and was unable to eat until 5pm. I take an anti nausea medicine and cocodamol usually (as the cocodamol does often make me nauseous) and was unable to take painkillers due to my nausea and empty stomach.

Have any of you experienced something similar? did it get better with time? It‘s surely related to stopping the medication, but I never had anything like this with the various other progesterone based pills I’ve tried and stopped over the years!

doctor is unfortunately useless, as I have tried all hormonal options available to me and had surgery, I have been told there is nothing else they can offer me. I’m saving up to speak to a private specialise (UK) as both NHS specialists have been useless.

I’m 22 days late right now and had my last period on Sept 2nd-6th (very heavy and painful as usual). However I’ve taken 4 pregnancy tests ( all negative) per my doctor requested me to check every 1-2 weeks. I’m waiting for my appt w her (which isn’t till January 2027 but I did request for anything sooner). Is this possibly endometriosis or PCOS? I do have heavy periods w/ painful cramps majority of my life, as well as an irregular cycle.

This is my first time experiencing being this late. I do track with an app but I know it’s not something to fully trust. Hoping to get bloodwork soon to see my levels.

I am experiencing some cramping (tolerable) and aching back pain w/ bloating (especially after I eat). My boobs have been sensitive and aching as well.

Thanks I appreciate the help, anything is better than nothing :)

Hi Community. I am just curious about people's journeys.

1. pain started 6 years ago from stabbing sex pain

2. then pain progresses on the right side only and can't tolerate standing long

3. Sex pain is on and off depending on position

4. Had mirena coil after giving birth but still having period and pain still there idk if it got better

5. I don't bleed so hard on period idk I felt it's as normal as you can get?

fastrack to 2 years ago I now have a baby 18mos old, and the pain started coming back around 3-4 mos post partum once I have my period.

Present time: pain is worse on the right side almost mimicking hip joint pain and still can't tolerate standing for longer than 10mins. Sex pain is still on and off depending on symptoms

I am questioning whether to proceed with laparoscopy diagnostic procedure as I have 4 ultrasound and CT pelvis and MRI pelvis which showed nothing.

Any similar symptoms gals?

Thanks!

Hello,

This week my period arrived in the morning then by midday I was having severe pelvic pain to the point where I could hardly move. I threw up from the pain levels. One thing which was really odd was my entire right side of my body cramping from my shoulder downwards. This ordeal lasted a mighty 8 hours! Eventually fell asleep due to the exhaustion. Oh I also threw up multiple times and was extremely faint. I have not had an episode of this severity since last December. It’s always the same ordeal then the following days there is no pain. Has anyone with endo experienced anything like this? Worried it may be cysts or endo. Getting tested soon!

Hi all I’m 6 weeks post endometriosis laparoscopic surgery. They removed

Rectosacral ligament region – Deep infiltrating endometriosis identified on your preoperative MRI.
Broad ligament – Deep infiltrating endometriosis identified on MRI.
Ovary – An endometriotic cyst (endometrioma) was surgically removed.
Appendix – Your appendix was surgically removed during the procedure, although I can't confirm from the information available whether pathology showed endometriosis in it.

And they found mild adenomyosis.

I’m having on and off bladder pain, burning vaginal pain, and just pressure around my pelvic. Is this IC, post endometriosis surgery information, I don’t know I’m so tired of pain though, feels like I’ve just been in constant pain for a year.

What has helped your painful bladder? Just before the surgery for 2-3 weeks I was having painful bladder also but I assumed it was nerves.

I had my laparoscopic excision of endo late August. Went well, recovered normally and most of my pain subsided after 2-3 weeks.

I wake up Monday night in agony with severe pain in my tailbone/sacral region. The pain since has developed into pelvic pain which radiates up my back and down my right thigh but is most painful in my lower back right pelvis. I had to call into work sick 2 days in a row. In those 2 days I went to the ED who ran my bloods and did a neuro exam and a soft tissue ultrasound of my sacral region. All tests were unremarkable. I followed up with my GP for pain management and further investigation and soonest I could get an appointment for a pelvic ultrasound is in another 6 days from today.
I’m in consistent 8/10 pain, 5/10 with strong painkillers and I’m worried about being able to work next week.

I’m just afraid that I’m in so much pain so soon after my lap and it went from 0 to 100 so quick? Surely this couldn’t be new endo growth in that span of time especially since I have an IUD and am on ryeqo. And if not then what is this pain?

Has this happened to anyone else?

Hi everyone, very new here! So I have suspected I may have endometriosis for some time; my mother has it, and I get very similar symptoms. However, after a transvaginal, the Dr noticed some potential adenomyosis but no signs of endo, and now im not sure which I have (if any!)

My symptoms are:

• Severe pain in the pelvic area that comes and goes (some days it's a dull ache like a period, and some days it feels like both my ovaries and cervix are being put through a cheese grater, and I can barely move)
• Heavy and painful periods
• Pain with bowel movements (feels like my bowels are being scraped from the inside)
• Pain during deep penetration
• Always tired and fatigued
• Lower back pain and pain that sometimes goes down my left leg (though im not sure if that's due to this or because I sit down so much for work)
• Frequent UTI's and needing to pee often

I know very little about both so sorry if this seems obvious!! Thank u!

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?

HOW can it be that 4 ultrasounds in 4 months have given me 4 different diagnosis???

1. Oh you have nothing, completely healthy!

2. you do have a large cyst. That’s all.

3. you have polycystic ovaries endo in the pouch of douglas and adenomyosis

4. your left ovary is fused to your uterus, but that could be normal there is nothing else.

WHAT?!!?

Anyway. I‘m cyclically unable to WALK. My right leg only tremors instead of lifting. 10 days a month. On repeat the last 5 months i had these cycles of inability to walk. What do 3 of those doctors say? Since neuro didn‘t find anything I MUST BE IMAGING IT! They tried to send me to psych. I‘m not mad, i don’t want attention and i don’t have these perfectly period-timed-issues from a brain problem.

Only one doctor believes 100% that cyclic issues MUST be endo lesions growing somewhere on nerves and no mistake. She is my life line. We‘re trying Ryeqo for 3 more months and if that doesn’t work she grants me another lapro to look if they can find it. I‘m begging for a hysterectomy too for good measure.

Still why in gay hell does every ultrasound in a 4 month time span has given me completely different results???

Hi all,

I’ve had terrible period cramps and unexplained abdominal pain ever since I got my first period at 11. I started taking hormonal contraception (HC) at 15 to control the cramps, but stopped when I was 22 because I decided I would rather deal with the monthly pain than stay on the pill.

Five years ago, when I was 27, I was diagnosed with endometriosis. The lesions were found incidentally during an unrelated surgery and were removed. My gynecologist told me that the only way to prevent the lesions from coming back was to take HC continuously, without the monthly break. I’ve been doing that ever since, and I no longer have periods or pain.

The problem is that I hate being on it. I’ve completely lost my libido, started gaining weight, and had to make major lifestyle changes to keep it under control. Overall, I feel like my quality of life has decreased a lot ever since.

So I’m wondering: is continuous hormonal contraception really the only long-term treatment option to reduce the risk of recurrence/progression?

I’m currently changing gynaecologists because I moved to another city, and I would really like to bring this up with my new doctor. What other options might they discuss with me? Has anyone here switched to a different treatment because of side effects from HC?

i suspect i have endometriosis or anenomyosis but i am still being investigated and waiting for gynaecologists to take me seriously. in the meantime, my GP recommended i start birth control for pain management. my symptoms of extreme fatigue and the agony from severe cramping were having a negative impact on my mental health and at that point i was fed up with the pain so i agreed.

i started on rigevidon (combined pill) which just worsened my symptoms and led me to a&e to rule out a blood clot. i stopped that and was prescribed desogestrel. i’ve only been on it for three weeks but it’s really calmed my physical symptoms. its completely stopped my period and the initial bleeding only lasted a few days for me, it was much lighter than usual and i had such light cramping, it was basically nothing compared to my usual pain.

the issue is, my mood has been horrendous. it’s as if starting the mini pill has made my antidepressants stop working. i’m on the max dose of citalopram and so i couldn’t increase it to keep my physical symptoms at bay without affecting me mentally. i have such low moods, anxiety, irritably, insomnia, rage, all to the point where ive ended up sobbing at work and gotten to that point where i don’t want to do anything all day including take care of myself.

i don’t know if i should wait it out and see if these side effects subside because i know it can take time and it might be worth it if my endo symptoms are kept at bay. but also, i don’t know if i can spend another day in my mind like this.

any advice from anyone who’s tried this pill? does it get better? is it possible to find a pill or pain management that eases my physical symptoms without negatively impacting my mental health?

appreciative of any thoughts and suggestions x

​

I am a **23 F**, I've had painful periods for the longest time and was always told to just use painkillers even when the painkillers weren't helpful. Years after, I got an abdominal ultrasound scan does doctors were trying to figure out whether I had endometriosis, pcos or adenmyosis (sorry if I spelt that wrong). They ruled out that it was most likely not pcos and couldn't find anything through the ultrasound. They told me I would do an MRI to see what it really is, but instead of that they made me see a gynaecologist to prescribe me to take Millinette 30/75 (combined pill).

I was terrified of taking birth control I've heard so many stories, most of them being bad and was worried about how this could affect my fertility in the future. But the gynaecologist explained that it would help the endometriosis or stop it from growing? (Keep in mind, it's still suspected endometriosis) I didn't feel as reassured because I felt like I was in shock almost because why was that the only treatment I could have been given? Days after I told my GP that I was afraid of taking the pill and she'd told me "many women take it, it's normal". It still didn't feel right.

Up until very recently I decided to try and take it and see how it goes only because the random pains in my lower back, pelvic area, sharp pain in br*asts, the shooting pain up my you know where is unbearable and ibuprofen does nothing. And also because a **male** GP had told me endometriosis doesn't affect women's ability to work which felt dismissive because it was affecting me, I genuinely struggle to go outside during the pain. Sometimes it's so bad I have to stay in bed all day.

What do you think? Is there anything else I can do? Including diet.

I live in the UK so treatment might vary from other countries but I would appreciate advice, any support and tips because sometimes I cry to myself and wonder how this will be like years from now. How I'll have to live with this condition forever 😭 please help a girl out !

I see a lot of people post about not seeing anything in their MRI but then uncovering endometriosis during surgery.

I got my MRI results back and I was shocked to see something since so many people don’t.

What have your surgery experiences been like for those who have seen endometriosis in your MRI? Was it a long surgery? Did they do more or less than you expected?

To summarize the findings for those interested:

My MRI confirmed adenomyosis and deep pelvic endometriosis, with significant involvement in the middle and back of my pelvis and numerous bands of tissue in the space between my uterus and rectum. The uterine wall is abnormally thickened, measuring up to 16 mm in the junctional zone, and both ovarian walls appear thickened, particularly on the left. The endometriosis extends toward the rectum, but no definite bowel tethering or obstruction was seen on the MRI.

*the first time adenomyosis was ever mentioned to me was at a consultation with an endo specialist 2 weeks ago.
I had a laparoscopy in 2023 and there was no mention then.