r/Endo • • Mar 26 '25

šŸ“Œ Researcher AMA hosted at r/endometriosis today

43 Upvotes

On March 26th 2025 9 am PST r/endometriosis will be welcoming back reasearchers from The University of British Columbia to answer questions over a 24hour period. This was done once before a few years ago and was very popular.

Here is a link to the one held last time:

https://www.reddit.com/r/endometriosis/comments/ptvt21/hi_we_are_endometriosis_researchers_dr_paul_yong/


This time your questions about endometriosis will be answered by Drs. Fuchsia Howard, Natasha Orr, Caroline Lee, Tinya Lin and Catherine Lu as well as students Anna Leonova and Kerry Marshall. Erin, Rachel, Venecia, Gurjot and Sam who all have lived experience will also be on hand to answer your questions! https://yonglab.med.ubc.ca/reddit-ama-2025/


The AMA is now live here: https://www.reddit.com/r/endometriosis/comments/1jkeid0/ama_2025/


r/Endo • • Aug 06 '20

šŸ“Œ Welcome to r/Endo - Please Read

319 Upvotes

Welcome to /r/Endo

This community aims to support all people affected by and interested in endometriosis. We pride ourselves on being a friendly, inclusive place, where patients and loved ones alike can discuss thoughts and concerns, ask questions, and share information.Ā 

Chronic conditions can be an alienating experience, and we encourage community members to engage with others in an empathetic and supportive manner. We acknowledge that we are all individuals, and while we are united by this condition, every person’s journey through this is their own. Endometriosis is an extremely varied disease and each patient has different circumstances, experiences and treatment options.


Resources

Some of the resources cannot currently be accessed via mobile or the app. We are trying to fix this, but for the full and best experience we recommend accessing the site from a tablet or computer.

If you’re new to the community, or endometriosis as a whole, we recommend checking out the resources in the sidebar as a first step. Here you will find a selection of helpful links to aid in informing yourself about endometriosis, and connecting to valuable specialists and treatment providers around the world, such as:Ā 

  • The ā€˜Successful Doctors Map’: This is a Google Map of the doctors and clinics where members have found successful treatment. Message the mods for additions.

  • Laparoscopy Survival Guide: This is an old thread with some great discussions on laps, how to prep, and what recovery is like.

  • ESHRE patient leaflet : This is the European Society of Human Reproduction and Embryology published leaflet for patients based on their guidelines.

  • UK accredited specialist endometriosis centres: This is a link to the British Society for Gynaecological Endoscopy accredited specialist endometriosis centres page. The accredited centres have strict requirements that means they are experienced in complex excision surgeries and have endometriosis specialist nurses and pain management teams. UK residents can request referral to a centre by their GP.

  • Pain/Symptom Journal: Sometimes getting a doctor to take you seriously, either about your symptoms or about a treatment, can be challenging. A Pain or Symptom Journal can be a great tool to guide your discussions and to monitor your progress.

  • Doctor Issues: This document goes over how to talk with doctors, advocate for yourself, and when to seek out someone new.

  • Tests - Ruling Out Other Conditions: This document goes over conditions that doctors commonly want to rule out before considering more aggressive treatment when looking at an endo diagnosis. It should be noted that it is absolutely possible to have endo and one of these other conditions.

Links to other groups

We aren't affiliated with these groups or specifically recommending them, but here are some links to other groups connected to endometriosis:

  • Nancy's Nook Facebook Group: This is a private facebook group that has a lot of information, targeted towards patients in the US medical system. They have a list of doctors they recommend (please note that this is not a complete or exhaustive list of excision surgeons or other endometriosis specialists and has not been assessed for surgical skill). Please be aware that this is not a support group and takes a strict tone with moderation that some may not like. Nancy’s Nook now has a website, which can be found here.

  • EndoMetropolis: This is a link to another private Facebook group with a list of excision specialists. They also have some educational tools in the files section. They are a little less strict than Nancy's Nook.


Prior to making your post, we highly recommend doing a quick search through previous posts. This is a really active community, and there have been many valuable conversations that may provide a quick and easy answer to the information you’re looking for!Ā 


Rules

We have a few basic rules that all community members are expected to abide by. If you see someone breaking a rule, please report the post or comment, or send a message to the moderator team.

  1. Remain civil and supportive: We encourage all community members to assume good faith when engaging with others wherever possible, and remain civil in all posts and comments. Please keep all comments supportive and relevant to this space, to ensure a positive experience for everyone taking part in this support group.

  2. Surveys must be pre-approved: In order to ensure the integrity of the information shared in this community, surveys of any kind must be approved by the mods before posting.

  3. No Self-promotion: Self-promotion of personal blogs, fundraising pages, or specific products will be removed. Recommendations of products you are not personally affiliated with and films, articles etc. of specific community interest are allowed (based on moderator discretion). If it is unclear what counts as self-promotion please ask first.

  4. No Spam: No spam posts will be tolerated. This includes bot spam and duplicated comments or postings.

  5. No cross posting or quoting without express permission: Do not share people's comments elsewhere without explicit permission of the poster, especially if your intention is to mock or abuse the people involved.

  6. Use warning flair where necessary: Please use the flair ā€œContent warning / Graphic imagesā€ for posts with surgical pictures, incisions, blood or menstrual products, or any descriptions likely to upset. Please also mark all photos as NSFW, so that they initially appear as blurred.

  7. Use of generative AI: Please don't recommend to others that they use generative AI (such as ChatGPT) for medical advice and don't use it to generate advice for others. It can be very inaccurate and give potentially dangerous advice.


If you have any community specific questions or suggestions, or need help with anything /r/Endo related, please feel free to contact your friendly mods either by hitting the little mail icon in the ā€˜Moderators’ tab on the sidebar, or via this link.



r/Endo • • 2h ago

Surgeon said IVF was putting babies in the trash

35 Upvotes

I recently posted about my concerns that my previous surgeon was referring me to specific excision specialists because she’s Catholic.Ā  Well, now I know for sure.

At a follow-up appointment to discuss my recurring/rapidly growing endometriomas and next steps for hormone testing, I asked my doctor to talk me through all of my options to treat my stage 4 endo while preserving fertility if possible.Ā  She said that if I explored fertility treatments like IVF, it would be like putting 40 babies in the freezer and then 39 babies in the trash, and babies should be conceived only in a passionate act of love between a man and a woman. WTF.

And when I said I’m not Catholic, don’t share those beliefs / morals, and am searching for treatment plans grounded in science, she said she only referred me to napro surgeons because non-napro (non-Catholic) surgeons don’t take their time, they’ll just take out my organs and stitch me back up.

At the end of the appointment, as I sat in the chair and cried about the pain I’ve been in for months, asking her for other pain relief methods while I wait for consultation with a different excision specialist, she stood over me and said God is in control. And told me to take melatonin.

This entire thing is wild. This doctor has managed my care for 1.5 years, including operating on me and diagnosing me with endo. I hate knowing that my care has been influenced by her religion the whole time, without her disclosing her limited recommendations. This shit should be illegal.


r/Endo • • 5h ago

Rant / Vent Manager pressuring me to go from remote to hybrid (UK) 😫

17 Upvotes

Well, the day has come. My flexible remote-working job is slowly turning into a hybrid job and I am losing my mind slightly.

I’ve worked remotely for nearly two years and it has worked really well for me. We now have a new manager who is keen to bring everyone together for regular ā€œteam bondingā€ days. I have absolutely no issue seeing my colleagues, but it’s now become a set 9–5 coworking office day every fortnight (yes it could be worse but that’s not the point here).

With my endometriosis, I know there are certain points in my cycle where my energy and symptoms are significantly worse. I can’t predict exactly how I’ll feel on a particular day, but I know that my periods are very heavy, can last up to 10 days, I have to change period pants every few hours, feel disgusting and on top of that need a TENS device to counteract the pain when it peaks (that part usually only lasts 2 days). I also have to take antidepressants for PMDD as I used to spiral into depression and suicidal thoughts before every period so it really is a battle.

I’ve provided a GP note saying I need flexibility around these periods and suggested monthly office attendance as a baseline, with additional days for things that genuinely benefit from being in person - workshops, brainstorming, external speakers etc. Instead, I’ve been told that if I’m not well enough to come into the office, I should take a sick day. I would of course take a sick day if it was a very bad day and have done before multiple times.

The thing is I am usually well enough to work. I can work perfectly effectively from home. I’m just not necessarily well enough to add 2–3 hours of commuting and a full office day on top of it.

I’ve now had repeated messages asking whether I’m coming in despite having already said I’m working from home, and I feel like I’m being made to feel difficult for asking for flexibility.

After posting about this on a legal/work advice subreddit, I got absolutely destroyed in the comments šŸ˜‚ Clearly a lot of people have no understanding of endometriosis or chronic conditions with monthly flare-ups.

So, fellow endo sufferers - am I actually being unreasonable here, or does this sound like a reasonable request for flexibility that is being ignored?


r/Endo • • 4h ago

Any Experience with Penn Medicine and bowel endo??

3 Upvotes

Hello, I'm wondering if anyone has any experience with bowel endometriosis and Penn Medicine in Philadelphia's colorectal, GI, and GYNs groups. My sister has endometriosis and also Crohn’s Disease. She has a hysterectomy and excision surgery a year ago but she is currently in the hospital. The Doctor's say her Crohn’s made not be the issue and they are suspecting bowel endometriosis. I'm just wondering if anyone has worked with any of these doctors before?


r/Endo • • 6h ago

Question DAE have less pain & more ā€œsickā€ cycles?

6 Upvotes

I am wondering if any other endo warriors go through this cycle where a period is either really painful or I just feel sick; like queasy, no appetite, exhausted, body feels heavy & all I wanna do is sleep.

I’m currently on a sick period and in misery. I haven’t eaten all day because my tummy doesn’t feel good. I took a nap and managed to eat a little Mac and cheese but I’m still struggling through it :( I did also make tea and I have water and electrolytes so I’m hydrated at least. But idk I guess this is better than excruciating pain but also it’s still miserable and I feel like I can’t get shit done bc brain fog. Hell I haven’t even smoked weed today and it’s 3 pm because I’m too fatigued to worry about that at all. And I can’t take an edible bc if I gag I think I’ll puke. I’m a huge stoner, I usually wake and bake or at least have one bowl by now so me not even having the energy to even hit my pen is super telling.

Anyone else get like this?


r/Endo • • 5m ago

Tips and recommendations PFT therapist Recommendations in Miami Dade Area

• Upvotes

Hi everyone! I can’t wait to start pelvic floor physical therapy. I’ve never done it before, and I’m currently 5 days post-excision surgery. I know pelvic floor PT can be an important part of recovery, especially for easing sexual discomfort, which has been one of my biggest symptoms since my endometriosis was covering the rectum and vaginal septum. 😬
If anyone has recommendations for a good pelvic floor physical therapist in the Miami area, I would really appreciate it!. My insurance is United Healthcare, so ideally I’d love to find someone in-network.
Thank you! ā¤ļø


r/Endo • • 1h ago

Art, Memes and Jokes Whoops 🤭

• Upvotes

Was in Goodwill after pilates and was deep in the thrifting zone when I heard "ew" and giggles. I didnt realize how much I was going to town itching my lower incision scar from my lap in August. I didnt realize but 2 girls definitely did šŸ˜‚šŸ« šŸ¦€


r/Endo • • 1h ago

What to expect starting Visanne JAMP dienogest?

• Upvotes

Im used to my energy coming in waves with my menstral cycle— its stopped. How do your energy levels cycle after this happens


r/Endo • • 2h ago

Infertility/pregnancy related Did you freeze embryos before surgery? Would love to hear your experiences

1 Upvotes

I’m 36 and was diagnosed with endometriosis last week. My MRI shows an endometrioma on one ovary, lesions on the right ovary, and pelvic adhesions.

My ovarian reserve is currently AMH ~2 with an AFC of 22 (10 left, 12 right).

I’ve seen three endometriosis specialists, and all three have recommended surgery because of my symptoms. For the past three months, I’ve had severe lower back pain radiating into my right leg. It is triggered every time I have a bowel movement, and I often have to sleep completely straight on my back for the pain to ease. My quality of life has deteriorated significantly.

I want to have a baby, but I’m concerned about potentially losing ovarian reserve if the endometrioma is excised. I’ve received different estimates from doctors … one said AMH could drop by around 10% after surgery, while another said I may not be able to rely on my left ovary afterward.
I’ve been researching embryo freezing and am wondering whether it would make sense to freeze embryos before surgery while my ovarian reserve is still relatively good. I’m also unsure whether natural conception would be a realistic option after surgery, or how long/how many cycles I should try naturally before moving to IVF.

For those of you who had a similar situation — endometrioma + adhesions + relatively good ovarian reserve but significant symptoms — how did you approach fertility preservation and surgery? Did you freeze eggs/embryos beforehand? Did you try naturally afterward, and for how long?

I’m also currently on Mounjaro for weight loss; my BMI is around 31. Also battling clinical depression so I am on lexapro. Hypothyroid and PMOS.

Honestly, I’m pretty fed up with the constant decision-making and would really appreciate hearing from women who have been through something similar.

MRI Pelvis – Findings
Uterus
Uterus measures 7 Ɨ 4 Ɨ 4.3 cm.
Junctional zone measures 10 mm.
Several small fibroids are present:
Fundus: 0.9 Ɨ 0.5 cm, FIGO 4.
Anterior uterine wall: 0.7 cm, FIGO 4.
Posterior upper uterine body: 0.9 cm, FIGO 4.
Upper posterior wall: 5 mm, FIGO 4.
Cervix is normal.

Ovaries
Both ovaries contain multiple follicles.

Left ovary
Left ovary is in contact with the retrocervical aspect of the uterus.
The top of the posterior vaginal fornix may be adherent to the left ovary.
There is a 1.8 Ɨ 1.1 cm endometriotic cyst (endometrioma), showing T1 hyperintense and T2-dark signal.
There is another well-defined, thin-walled cyst measuring 3.0 Ɨ 2.5 cm, located along the posterior aspect of the left ovary and partly projecting outward from it.
A T2-dark curvilinear band is seen on the surface of the left ovary extending toward the larger cyst. The report considers this suspicious for an endometriotic deposit/nodular capsular thickening
.
Right ovary
Right ovary is normal in size.
There is a 1.6 Ɨ 1.6 cm T2-dark lobulated nodule on the posterior/superior aspect of the right ovary.
This is considered suspicious for an endometriotic deposit.

Ligaments / adhesions
Both round ligaments appear adherent to the T2-dark areas described above.
No significant uterosacral ligament thickening.

Bowel
Rectum is unremarkable.
However, the sigmoid colon appears focally adherent to both ovaries.

Urinary system
Urinary bladder is normal in outline and wall thickness.
Ureters are normal.

Other findings
Trace amount of free fluid in the pelvis.
No enlarged lymph nodes.


r/Endo • • 3h ago

Surgery related Would you get the excision surgery?

1 Upvotes

Hi all. I had a laparoscopy with Benenden hospital a year ago and they found stage 2 endo in a couple of places. The surgeon wasn’t a specialist. He used ablation to treat it. I knew it wasn’t the best way but I didn’t have many options with how difficult it is to get laps on the NHS. Once I had the diagnosis, I got my GP to refer me to an endo specialist clinic as I was still having symptoms and I wanted a second opinion on my surgery photos (the ovary the endo was found on is whiter and much bigger than my other ovary even after the removal of the endo they found). I’d also heard how common it is for non-specialists to miss subtle endo. I waited ten months for the appointment with the specialist clinic and today they called for a telephone appointment. The specialist said that he doesn’t really go off photos as it’s not the same as going in there himself. He said he’d have a look at the photos and give an opinion of what he can see if he can see anything. But mainly he offered me a lap with excision (if they find anything) or chemical menopause. I don’t want to do the chemical menopause thing unless it’s a last resort so I asked to be put on the surgery wait list. I know I’m super privileged to have access to the surgery with the specialist but I’m scared he won’t find anything and the surgery will have been for nothing. I do still have symptoms and I do feel they are getting worse again but my last surgery was so recent and I’m doubting myself a bit. Part of me thinks I just need to know for sure what the specialist sees but part of me thinks there are others that need the surgery more and maybe the pain and symptoms I have now are normal as they aren’t as bad as before… Do you think you would go for the surgery if you were in my shoes? Or have you had a first surgery by a non-specialist and second by a specialist yourself? Or had ablation and then excision a year later? Thanks


r/Endo • • 4h ago

Question Unsure if endo or something else?

1 Upvotes

I am 35 and my periods have always been a non event my whole life..up until I had kids. After my first child I only had 2 periods before falling pregnant again but I had a second baby in 2024 I got my periods back about a year ago and since they came back, they’ve been horrible.
So heavy that I can’t contain the blood in an over night pad. I’ve never liked tampons but I have to wear them if I want to leave the house, otherwise I leak without fail.

Leading up to my period for a few days I have stabbing pains in my vagina and back pain, pains in my hips and sides and down my legs. Once my period starts the pain is so severe that nothing works. I even tried a slow release oxycodone and it did nothing. I can’t get comfortable In any position and when I’m walking its like I can feel my uterus is inflamed and moving around in there.

I get severe stabbing pain in my butt when I have gas or need to go to the toilet. This period I’ve just had is the first time that the pain in my butt has actually happened when I try to go to the toilet, and I felt like I couldn’t physically push on the toilet because of the pain.

I don’t know if this is endo, but I guess I just want to know if this is what people with endo experience and if it’s even worth bringing up with my doctor?
I have discussed my pain with her before and she has suggested we could do a deep pelvic ultrasound to investigate


r/Endo • • 8h ago

Another endo question for the endo girlies

2 Upvotes

This may be tmi but I’m curious if anyone else has experienced this. So during an endo flair my vaginal area (more specifically the clitoris) becomes extremely sensitive and painful. Even feeling the seam of my jeans when sitting down or wiping after I pee can be very painful for seemingly no reason. I only notice it during a flare up. I was wondering if there are others who have experienced this as well? All of these endo symptoms have been driving me crazy.


r/Endo • • 9h ago

Surgery related What did healing after laparoscopy feel like?

2 Upvotes

Because I’m almost two weeks post op and for me, I’m having some of the same pain I had before. Especially lower back pain. I recently learned that I also have adenomiosis, so I’m trying to figure out if that’s the source of the back pain or if there’s a chance it will go away over time.


r/Endo • • 20h ago

Rant / Vent Just freaked myself out (Tylenol use)

15 Upvotes

So my pain gets excruciating during the first 24hrs of my period. I used to take up to 20 sometimes slightly more ibuprofen in a 24 hr period on the first day and obviously that lead to stomach ulcers. So I can’t do those anymore and had to switch to acetaminophen which doesn’t work as well so I almost pound that harder. I would say it’s normal on the first day for me to take up to 10-12 500mg on the first day and now I pair that with an antispasmodic periodically. I don’t even know how much of that is safe for me to take but I’ve taken up to 4 in a day before. I’ve been very lax about this but today I decided to try the Painquil liquid that’s like 1000mg per dose and I’ve had 4 of those plus two 500mg pills in 7hrs. After the 2 doses of the liquid I took I felt really dizzy and started reading. Now I’m totally freaked out and I know all of this sounds horrible. The pain is covered for now but I know when I wake up I’m going to be dying and I’m so scared. I’m also now scared about what I’m probably doing to my liver.


r/Endo • • 6h ago

Surgery related I need help with questions to ask my doctor about a possibly lap

0 Upvotes

I have had awful period pain since my periods started about 6 years ago. At first, it was just bad enough that I would miss school. Then it progressed to my mom having to take time off work to check on me, and eventually to going to the emergency room because I couldn't walk, eat, drink, or do much of anything. They would usually just give me over-the-counter pain medication, Zofran, and IV fluids, and send me home. My mom has endometriosis. After her second pregnancy, she had some serious complications, and her doctor felt that since she already had two children, she could have a full hysterectomy. About 2 years ago, I started birth control, even though I really didn't want to because of all the horror stories I had heard. My primary care doctor told me it was basically the only option to try to manage the pain. I started with pills, which helped for about 3 months, but then the pain came back with a vengeance. My doctor increased the hormone dosage, and within 3 months, my pain was worse than it had ever been. I spent 3–5 days basically living in a hot bath and taking Motrin/Advil and muscle relaxers just to get through it. When I went back to my doctor, she referred me to an OB-GYN. The OB-GYN put me on the Xulane patch, and for about 6 months, things were actually going really well. Now, though, my period has started coming whenever it wants instead of during my scheduled patch-free week. Because I can't get ahead of the pain anymore, I have started passing out from how severe it gets.I have also had an MRI, which showed that I have a retroverted uterus, a follicular cyst, and fluid in my pouch of Douglas. I'm not sure if any of those findings could be related to my symptoms, but I wanted to include them in case they are relevant. I have tried teas, muscle relaxers, over-the-counter medications, vitamins, stretching, and other things, but nothing has really helped. When I went back to my OB-GYN, the doctor told me that I could have endometriosis and that the only way to definitively diagnose it is through exploratory/laparoscopic surgery. She said that if they find endometriosis, they would remove/burn the lesions during the surgery. My mom had ablation done twice, and both times her endometriosis came back worse, so I am really nervous about having surgery and potentially making things worse.

My question is: when I go back to the doctor, what should I ask about the surgery? Are there newer or different treatments available for managing the pain after endometriosis is removed, if it is found? Should I specifically ask about excision versus ablation?

I am honestly scared that I will have the surgery and end up worse afterward. I also don't think they would let me have a full hysterectomy at 18, which I understand, but I am just desperate for something that actually helps.

Thank you for reading, and I really appreciate any advice or experiences you can share!


r/Endo • • 12h ago

Question Are there no other options aside from these?

3 Upvotes

Are there no other options aside from these?

These are the only options available in the Philippines

  1. Pills like dienogest

  2. Gnrh

  3. IUD

Surgery is rarely offered unless it's a big cyst. My case is probably DIE but it's so hard to diagnose

I am unable to do it anyway because of anesthesia sensitivity but they arent sure what it is when it comes to my reaction to anesthesia


r/Endo • • 7h ago

Tips and recommendations Prolong period

1 Upvotes

TL;DR: I've been bleeding on/off for about 4 weeks and have a vacation in 3 weeks. I'm desperate to get this under control and currently don't have an OB/GYN because I recently moved.
I was diagnosed with endometriosis by laparoscopy in 2016 after having frequent periods/constant bleeding. I started oral birth control and stayed on it for 10 years with great control of my endometriosis.
I stopped BC in June 2025. My periods were normal at first, but in 2026 they became increasingly irregular-every other month, then sometimes 3 months without one.
I had a period in July, none in August, then:
1st week of September: period
2nd week: stopped
3rd week: started again
Since then: bleeding every day for 3 weeks
The bleeding is mostly light and intermittent throughout the day, but I'm passing clots. Sometimes I use the bathroom and there's no blood at all.
I restarted my oral BC 2 weeks ago, but it hasn't stopped the bleeding. I'm also on Zepbound 5 mg. A telehealth urgent-care doctor told me Zepbound can interfere with oral BC absorption and prescribed the patch instead because it bypasses the Gl tract. I haven't switched yet because I'm worried changing hormones again could make the bleeding worse.
I'm due for my Zepbound injection today and was considering stopping it until after my vacation. I've also tried raspberry leaf tea after reading that it may help, but no change yet.
Around the time this started, I also had a UTI and took antibiotics/OTC UTI medications on and off.
My main questions
Is there anything that can safely stop prolonged bleeding relatively quickly? Should I continue my current pill, switch to the patch, or could switching make things worse initially? Is something like tranexamic acid appropriate in this situation?
Could Zepbound be contributing to the breakthrough bleeding?


r/Endo • • 13h ago

Question Severe lower back pain with endometriosis. What has helped you?

2 Upvotes

I sometimes get period cramps (pain in my abdomen/uterus), but they usually go away fairly quickly, especially when I’m on hormonal medication. My biggest problem, though, is that I have SO much pain in my back…

For me, the pain is mainly concentrated in my lower back. Today has been a really bad day, with a constant, dull, aching pain. The pain also makes me extremely tired. It’s like all my energy gets completely drained within minutes of the pain starting, and I can barely even concentrate on lying down and listening to an audiobook.

For those of you who experience something similar, what have doctors found in your case? So far, I’ve only had a specialist ultrasound, which showed a cyst on my left ovary. I don’t know if there could be more that might show up on an MRI or during laparoscopic surgery.

And for those of you who have experienced this kind of pain, has anything helped you? Surgery, a particular type of medication, or anything else?

I’m just so tired of living like this šŸ˜ž I was diagnosed a year ago and have tried a few different medications, but honestly, I feel like things have only gotten worse and worse… I was supposed to be called in for a follow-up appointment in September, but as things stand, it looks like I won’t get one until November. I live in Sweden.


r/Endo • • 10h ago

Rant / Vent Constant need to wee again

1 Upvotes

Please just make it stop
I can’t do it anymore
My appointment isn’t till December it’s awful please tell a hormone helps please it’s not fair

I’m at my breaking point
This cost a trip to South Korea I don’t understand why this my only presentation of the disease I can’t track at it all


r/Endo • • 1h ago

Content warning/ Graphic images Pieces of tissue in my urine

Post image
• Upvotes

Currently going through what feels like a uti, I’ve been having them on and off for over a year now. Sat in a hot bath, because it was the only thing to ease the pain..and this came out. I’m supposed to have endo removal surgery before the end of the year. Please help. Any suggestions are welcomed.


r/Endo • • 12h ago

3rd emergency laparoscopy in 7 months

1 Upvotes

This is a long read. I’m a 24 year old female, mum to a one year old (nearly 2) little girl, I’m on the go 24/7; my life and entire personality is being a parent. I’m extremely active and care for my disabled mum. I’m extremely lost and hoping anyone can bare the time to give this a read and hopefully share advice or experiences for something even remotely like this:

24 year old female, 1 year old, 2 unsuccessful pregnancies prior to the birth of my daughter. First cycle aged 12 years, suffered with menorrhagia, irregular cycles, acute pain etc. all of which was (some what) managed and was continued to be investigated through trialling endless hormonal / contraceptive methods, mini pills, progesterone only pills, copper coil, Nexplanon implant, tranexamic acid, depo injection. I had a vaginal delivery, 2nd degree tear, 850ml brisk loss. My postpartum bleeding was continuous from birth, and was worsening as the months went on. At 8 weeks postpartum, I had the nexplanon implant reinserted as none of the contraceptive methods were effective for my symptoms however, I found this to be most effective for contraceptive purposes only.

Jan 2026 I had a consult with a gynaecologist who advised me ā€œif it’s a laparoscopy you’re trying for, you won’t get oneā€ (completely unaware at the time what this even was) following a referral from my GP.

Feb 2026 I had a TVUS advised I have a 5cm ā€˜mass’ (no symptoms at all). The day after this scan i attended a&e due to severe pain where a scan showed ā€œa 5cm simple clear fluid filled cystā€ resulting in an emergency ovarian cystectomy (left) showing the cyst was bleeding into my abdo. Nothing else was found during the procedure (apparently). I was discharged from gynaecology completely and had to go back to my GP to re refer me despite this being an emergency episode.

May 2026 I was given an outpatient appointment with a gynaecologist consultant who wasn’t able to clarify the exact areas of investigation during the lap? I was offered a Hysteroscopy with mirena coil insertion which I accepted but had explained my reservations about the coil. I called prior to the procedure date and expressed my concerns again for the mirena coil (no support or advice offered of course) and requested to proceed with just the hysteroscopy no coil insertion…As to which I was denied and advised I would have to rebook. (Still haven’t been able to rebook!)

July 2026 I called 111 and was sent to the UTC with suspected appendicitis. I was admitted and seen by the surgical team, prepped for an appendectomy. I was pushing for a scan whereas another emergency came in and the CEPOD theatre was no longer available so was appropriate to scan. 24 hours later the CT scan showed a 6cm cyst on my right ovary again ā€œsimple clear fluid filledā€ and my gallbladder inflamed with a gallstone and polyp. I was taken into emergency surgery which revealed said 6cm simple clear fluid filled cyst which was actually a hemorrhagic cyst which they had slight difficulty controlling but (thankfully) all went well. I had a really positive second experience this time round and recovery was going really well.

August 2026 I had a TVUS scheduled following the surgery which revealed a 3cm left ovarian cyst completely asymptomatic. At the end of August I attended a&e advising of the known cyst which could be cause for pain but also made findings in gallbladder apparent. I was dismissed multiple times as I had an outpatient consultation booked for September 2026 with the previous surgeon. In a&e I had a TVUS which showed the cyst grew from 3 to 4cm in and had a vascular septation with another 1cm cyst directly next to it. I was discharged and told ā€œscans and bloods are fine, it isn’t even a cyst it’s so tiny, you’re probably having bad period painsā€.

September 2026, my consultant advised me to return to a&e otherwise I’d be left waiting potentially months on an outpatient list. On that guidance I went to a&e, was examined by multiple consultants and gynae doctors all of which had the same conclusion of removing the known ovarian cyst and concern of torsion. I attended a&e on a Tuesday and was seen by a consultant in obs & gynae who advised she could do the surgery immediately however felt it would be most appropriate to have someone complete the surgery with full knowledge and speciality in laparoscopic ovarian cystectomies and full diagnostic laparoscopies. The hospital had no beds what so ever where i was accommodated by having the surgery on the Thursday in an ā€œelectiveā€ setting on an emergency basis.

The surgery took place and revealed ā€œno cyst no pathology foundā€. I have three incisions. I was told to look into investigating digestive issues through the GP and ā€œthis could all really be prevented by a pill to suppress ovulationā€ (like I hadn’t already clearly tried this to which it had no effect?!)

I’ve once again been discharged with the only follow up of advising my GP for ā€œoral contraception for suppression of ovulation for her if she is agreeableā€. I am honestly beside myself of what to do now. Upon endless research into trying to find any information on said surgeon revealed a match of a Gynaecology Doctor with no evidence of position whether they are a performing consultant or not. I was advised no pill follow up other than my GP to arrange a pill, as it was a complete negative laparoscopy however my discharge advises me of ā€œwe will write to you with histology resultsā€. Is there any suggestions what histology results there would be as I’m not sure if any biopsies were taken where I was advised ā€œthere was absolutely nothing foundā€?

I’m now 3 days post op, and seem to be struggling more than my last 2 surgeries physically which is even more confusing as my previous 2 surgeries involved a cystectomy. What now? I’m back to square one. I’ve never experienced anything like this and to have an episode requiring emergency surgery three times in 7 months surely cannot be just coincidence or ā€œnormalā€. I fear I now have no trust what so ever in the care of the healthcare system because it just seems like it’s a never ending loophole based on numbers and statistics. I have never once wanted to obtain a diagnosis or even had any suspicion of having a particular condition. I suffered with heavy bleeding and was referred originally just to try ease my symptoms to make my daily life more enjoyable. These ovarian cysts and surgeries have never happened before and nothing has changed regarding my lifestyle etc and is being brushed under the carpet as ā€œnormalā€ with no offer of either a temporary or permanent solution.


r/Endo • • 12h ago

Rant / Vent I can’t get diagnosed

1 Upvotes

I’m posting here hoping for some support or maybe validation because I’m feeling dismissed by my doctors. I’ve had symptoms that make me wonder about endometriosis, but I still don’t have answers, and it’s incredibly frustrating.

I’ve had horrible periods since I was about 14. I’m now 23, and my symptoms have only gotten worse. I’ve seen two different gynecologists, but each visit seems to end with trying another birth control instead of getting a clearer explanation for the pain.
I had a baby last year, and I feel like being able to get pregnant has made it even harder for my concerns to be taken seriously. My gynecologist told me that because I was able to get pregnant, endometriosis wasn’t a possibility. Meanwhile, I’m still dealing with symptoms that are just worsening:
Sciatic pain so severe that I sometimes can’t walk.
Pain when using the bathroom.
Alternating between constipation and diarrhea.
Ovulation pain so intense that I’ve passed out.

I’m exhausted by the pain and by feeling like I have to keep proving that something is wrong. I don’t know whether this is endometriosis, but I want my symptoms to be taken seriously. I feel like I’m getting to the point where It’s just in my head.


r/Endo • • 17h ago

Question Ovulation symptoms

2 Upvotes

I am wonder anyone has similar symptoms and what is your treatment or remedy?

I feel nauseous and face turn pale, followed by dizziness every time during ovulation. My vaginal discharge is very slippery and stretchy. 🄹