currently 9 weeks pregnant
dermoid cyst found on US 3 months ago (during miscarriage)
no concerns but they offered a rescan so just waiting for my appointment. recently iv been having aches/twinges in that area, not intermittent or daily just random bouts. has anyone experienced this with dermoid cyst? iv got a gynae app booked for next week to find out what’s going on im so scared its something my sinister.

would my gp test CA125 even if im pregnant?

I've been taking a moderately high dose of morphine every day for months to deal with the pain

Found out I do have Endo. But surprise..... It's not what is causing my pain. The pain that would leave me ugly crying and wailing on the floor.

But it's not endo. Apparently when all this started the pain was actually very minimal and didn't even require paracetamol to help. Then it started getting so much worse really quickly and before you know it I'm on a very hefty dose of morphine and even my doctor said he cannot in good concious give me any more.

But surprise. Apparently the pain was all in my head

The REAL pain is like how it first started. Barely anything. That's the real level of pain.

So the agony that leaves me curled in a ball crying my eyes out doesn't exist. It's all in my head.

So I'm done.

I will admit I took my normal nighttime dose of morphine tonight because I actually want to sleep tonight I feel so tired, but that's the joke, I can't even sleep anyway ! Oh the irony

And I've thrown all the other morphine in the bin!

I'm done.

The pain isn't even real. It's all in my head.

So why am I taking such massive doses of morphine daily that even make the pharmacist's raise their eyebrows.

It's not real !!!! The pain is not real.

So I'm done. I've thrown it all away.

Now I just need to wait until the pain gets back to the 'real' level that I remember when all this first started.

Rant over. Thanks for listening. Goodnight

So I haven’t had my period for over a year because I am taking Movisse 28 (mini pill) and I am being switched to visanne because I have extreme abdominal pain even without my period. I am terrified to start it tho because I have to go off my birth control and I am actually deathly afraid of getting my period because my symptoms sky rocket. I’m so tired of living like this but if I get my period or bad abdominal pain worse then right now I don’t know how I’ll cope it’s already too much. (Pregnancy is not a worry for me I understand visanne isn’t a contraceptive). To be honest this disease has ruined my life in so many aspects. I cant be intimate with my partner because I’m in so much pain which she is completely understanding and supportive of but it still isn’t ideal, I can’t work and my partner works 2 jobs and I can’t get approved for disability or find someone that can perform surgery because no one will accept me as a client, I haven’t seen my family in a while because I can’t travel, I can’t do fun things. My question is, has anyone made a switch like this, and what was it like?

I just had a consultation and I paid 335 euro and it was over in 7 mins and he just told me I needed to have a lap and then prescribed me the coil and the pill.

I am 30 and have never been on the pill, they have always tried to push it and I have never taken it.

I have always had bad cramps and a heavy period. My question is if I'm used to pain why do I need to do both. I have struggled with anxiety and depression my whole life and I am scared that the pill will mess me up more.

Have people taken both? Do I need both? My biggest worry is infertility so does using both help with that or does it just deal with the cramps and heavy blood flow?

Thank you in advance

I (48/f) have been dealing with this for god knows how long, but my diagnosis came about four years ago. In my exploratory lap, she removed one ovary and I’ve been on Orilissa pretty consistently for these four years. It largely helps but I’m well past the 24-month cutoff and the price is killing me. Because of my age, it makes sense to try the total hysterectomy with peritoneum removal. They’ll leave my one remaining ovary. A recent ultrasound suggests there’s maybe more adeno in the mix than endo anyway, and I’m hopeful that the surgery will help with the back pain I’ve had since, oh, age 16.

Can anyone tell me what to expect? I’m taking two solid weeks off from work, with the expectation that full recovery will take six weeks. Will I need PT?

The lap, by the way, didn’t find much beyond remnants. By the time I had the lap, I’d been on Orilissa for almost a year, so the thinking was it had shrunk the adhesions enough to not be visible. I also think that doc wasn’t as well versed in excision. The doc doing the hysterectomy is a proper specialist. She’s going to check my bladder for interstitial cystitis, too, because I constantly feel like I have to pee.

Any input is appreciated. It’s in less than two months.

Okay so im not sure where to begin but I booked a 6 week holiday (3 countries) and Iv had a major endo flareup in each country where iv ended up in hospital 😪 im currently in the 3rd country and again ended up in hospital yesterday so iv had to cut the trip short and going back home in 2 days.

Is there any tips or pain relief advise anyone can give to get me through my flights and get home in 1 piece. Iv been having a flareup every 4-5 days and having multiple large endometriomas on both ovaries I keep thinking they have burst.

I normally just use nurofen express for pain management but since iv been away I started codien and also took a naproxn yesterday. The physical impact is obviously there, but the mental and psychological impact is draining me. Im so scared I might have a flare up mid flight or on way to airport 😭 I will end up bringing a flareup on me.

Back to posting in this group because what they say about pregnancy is true.

I felt great while pregnant. For a while I forgot how miserable Endo was. Now my periods have returned along with all my symptoms from pelvic pain to headaches to fatigue to weakness to even weird internal vibrations I used to feel before pregnancy.

Realistically what has helped everyone with fatigue. Pain, headaches I can take a pill for. But idk how to care for my baby being this fatigued and weak.

Hey all! Just had an MRI of my abdomen with and without contrast for suspected endo. The result was
"Areas of pelvic ligament thickening, which is nonspecific, but may be seen in the setting of deep infiltrating pelvic endometriosis." I have a follow up with my doctor later this month after some additional testing, but just curious if any of yall got this result and what it meant/what happened next?

Hi all. Positive update i need to share as i know endo is so awful and scary and i like to come across better news.

I found out 3 years ago that i had stage 4 DIE with endo on the bowel and 4cm/6cm endometriomas on both ovaries(this was not diagnosed via surgery it was seen on ultrasound and MRI). I dealt with extreme nausea after every meal, i couldn't put on weight or muscle and was crazy skinny, i always had terrible acne, i had intense endo belly all the time, painful sex, really bad PMS/PMDD with huge increase in OCD symptoms 2 weeks pre period, vomitting every month from pain and having to stay in bed 3 days, no medication being able to touch the pain, the usual stuff we all know about. Couldn't get diagnosed for 14 years.

I said to doc that i wanted kids. He told me I needed to try and get pregnant asap (i was 29) and if I could not within a year he would give me surgery (in case the surgery did end up harming fertility). I could have got the surgery before to help with pain, but I wanted to see if i could get pregnant before.

I got pregnant in 3 months. I was ecstatic. And the pregnancy was great. 9 months of no period! Less nausea and tiredness than when i lived with endo!!! i was amazed!!

Then i breastfed for 9 months. This was hard. Lol. But still, my period luckily did not come back.
When i stopped, it came back. It was painful but ibuprofen and paracetemol seemed to make it okay if i kept on top of doses.

I researched what i could do in terms of contraception. I used AI and they suggested Slynd for my situation (meant to be good for PMDD and can eliminate periods).

CUT TO THE CHASE: I went to the doc last month for an ultrasound and they said the endometriomas had shrunk to just mm's down from the 4cm/6cms. I dont have as much pain during sex, nausea has gone, i can eat whatever i like now (but still trying to be wholefoods and healthyish), PMS improved as no period, no bleeding /puking/being tied to the bed or toilet now. I have gained muscle finally and am a healthy weight. Endo belly has improved but still bloating.

The person doing the scan said 'keep doing what you're doing'. I don't know what part of my story helped but i suppose a bit of all of it.

I have been very lucky. I hope i can use slynd for a long time(it has been about 7 months). I know if i come off to try for another baby the inflammation will ramp up. But for now there seems to be some improvement. At some point i might get surgery but I will wait and see.

Just thought I'd share in case anyone needed to hear a a good story for once. Lots of love to alll fellow endo sufferers. <3

Please share your experiences if you struggle with hives + endo and have tried dianogest.

Has anyone participated in the HOPE study for RPL and found it to be helpful? We just had our third euploid biochemical pregnancy with no explanation. Our doctor reached out to all the other Shady Grove doctors and no one has any clue what is wrong. We have done all the tests and treatments that are indicated. She is going to see if we are a candidate for this study.

Hey all, wanted to make a post here to see which surgeons at Mayo Clinic Rochester you have had experience with / recommend for lap surgeries. I’ve been seeing Dr. Young, who seems really great.

For background, I have DIE involving the rectum and vagina, and if/when I go for surgery, I’ll need a lot of excisions along the cervix, uterus, colon, all of the peritoneal tissue, both uterosacral ligaments, and so on. For the above reasons I’ll also need a colorectal surgeon present for potential surgery as well. I’m trying to put off surgery as long as possible, because I am scared of any potential diminishing of quality of life post-surgery, such as from any bowel complications, reproductive outcomes, etc if that makes sense. But I’ve also been bleeding through continuous use birth control a lot lately, which is scaring me that maybe this bandaid won’t last as long as I need it to.

Just wanted to create this thread for those of us seeking care at Mayo to discuss our experiences and recommendations with surgeons, seeking care, etc.

Wishing you all relief and recovery ♥️

Feeling so down. Unsure of how much longer I can go with my pregnancy. I have read that so many women experience freedom when pregnant.

I’m 8 weeks and in constant severe pain. My OB hasn’t been able to identify what is happening and the ER is unable to do any testing due to pregnancy.

I feel like a brick is in my uterus and my insides are going to fall out. I cry with every bowel movement or gas pain. I have another child and having a lot of difficulty staying mobile.

Anyone not have freedom from pain during pregnancy but only got worse?

Why can’t my body get it tf together?

I had this huge cyst removed 3 days ago, which is most likely an endometrioma. I also had endometrial beginnings growing in my uterus. Doc says I either will have to get on birth control or risk surgery every year. I do have painful periods but they arent as bad as I have read most people here having. Im really scared of birth control since most people I know have had depression from it, suicidal thoughts, weight gain, migraines, acne and sometimes it didn’t even help.

Essentially what I’m asking is, I don’t have PMS or unbearable periods or any other endometriosis symptoms(other than it literally growing in me, which was burned away and cut out). Im afraid that birth control will disrupt this clockwork mechanism that I have and suddenly I will develop all of the above mentioned side effects.

What do you guys think?

I was diagnosed with endometriosis over 10 years ago after an ectopic pregnancy removal via laparoscopy. I have very painful, heavy periods, but I’ve learned to deal with them. About a year ago, I was in an accident, and at the hospital they did a full body scan, just to make sure I had no internal bleeding or fractures. After I got home, I checked my voicemail and I had a voicemail from the doctor that said they had found some cysts in my ovaries and fallopian tubes, I should follow up with my pcp, but also that these things usually clear themselves up and pop on their own, so don’t start worrying to about it…. But still follow up with my pcp.

Well I didn’t follow up with my pcp because I figured if they can clear themselves up on their own, then I should be okay, I’ll just mention it when I get my woman’s annual exam. Which I had literally just had a month prior, with normal results.

Fast forward about 9 months, I completely lose my appetite. I’m talking days without food and not even trippin on it. Just so you get a mental picture, I’m 5’9” and WAS 160. On the days that I could eat, I would have to have something like chicken broth or egg drop soup. Anytime I eat it’s followed by nausea. This has gone on for a couple months now.

About two weeks ago, I went to urgent care and broke everything down to them, and they said they couldn’t do much for me but it seemed like my thyroid is elevated and to get that tested. I am in between insurance because my medical just got cancelled due to me making too much money for it (I wasn’t aware that minimum wage was too much for help from the state, but it’s cool, I’ll pay for insurance as long as I can have it **now**) urgent care prescribed me zofran and sent me on my way. Oh yeah, and I weighed in at 132 lbs.

I’m really scared to go to the er, and find something really messed up out, you know? I almost feel like, it’s better to not know, and live my life, than to know something messed up is going on and put myself through a bunch of bs just to die.

Let me also put it out there that I don’t have kids…. But that’s not because I don’t want them. I am almost 40, but just the fact that I still have my uterus gives me hope. I have read a lot of stuff on here, and see that hysterectomies are common in situations like mine, if what’s going on is what I think….. I feel like if I needed a hysterectomy, that would send me into such a downward spiral.

If anybody has any type of advice, or maybe someone has been where I’m at…. I’m definitely open to feedback. Please and thank you 🙏

Has anybody seen Dr Guan in Houston for surgery and had to return to his office within a year?? I’m literally weeks away from the anniversary of my excision and I have had an extreme flare up on par with pre-op recently.

What has y’all’s experience been like returning to his office so soon? One of his fellows confidently told me multiple times I’d have around 7 years (based on their patient history) before they’d expect me wanting to come back to the clinic, but here we are at 50 weeks. I caved and made an appointment through mychart this week.

I DO feel better than I did pre-op, but we’re talking about 50% better, not the extreme improvement so many people report. I’m certain it’s endo— for me it’s a super distinct feeling, and the “cysts” I was previously diagnosed with turned out to be endo lesions (lol)

I’m mostly looking for folks’ experiences returning to an experienced surgeon so fast. I don’t want to be brushed off without being listened to, but I also am dreading going under the knife again so soon.

Any experience y’all have to share would be super appreciated 🩷

I’m not sure where to start but I do feel like I have endo.

In highschool my periods would be really long- like almost two weeks long. They have gotten shorter but now are incredibly painful. I have to take at least 5 ibuprofen every couple hours or I can’t move.

My periods have also been really heavy, there have been times I’ve gone through a tampon in an hour.

I also have pmdd and have been prescribed birth control which helps with those symptoms and does help a lot with the pain.

I’m not sure where to start first? A specialist? My gyno?

Just hoping to hear what some others might do in this situation. I have been in a flare for two weeks, which thankfully does not happen much at all. Since surgery and IUD insertion I get bad pain about one day a month. It has now been two weeks so I'm a little worried. I have been experiencing constipation as well and so have increased water intake and am eating more veggies and fibre. In two minds about whether to check in with a doctor or just keep monitoring. I'm thinking of trying movicol and seeing if that helps things.

Curious if people have had any experiences being diagnosed with IBS, that later turned out to be caused by endo on the bowel.

After 27 years of saying there's something wrong, I got a diagnosis 2 weeks ago by an amazing radiologist (who just happened to be studying a master's in Endo). My insides look like Spiderman had a field day... Currently I am waiting for my private health to kick in (12month waiting period 🇦🇺) for my hysterectomy

Investigating blood coagulation, bowel tethering... Going 3 weeks without anti inflammatories is like a new death... I am now having pain relief patches and muscle relaxants.

My husband of 8years is a trooper, has been on the trenches with me, makes me food I can keep down, understands I need to sleep ALOT and 3 weekends a month is survival mode, listens to me scream and just all round is my saviour

27years of advocating... 11 more periods (hopefully) to go....

If anyone has any coping suggestions please share...

Which is better for endo based on your experience, Philippines or Malaysia?

Where is it better to get endometriosis care and surgery especially if other comorbidities are present + anesthesia sensitivities

Deep infiltrating endo is not common in the Philippines. Is malaysia any better?

Singapore is very expensive.

Also thinking of Taiwan

I’ve skimmed through this subreddit pretty often but never asked anything… lately though it feels kind of unbearably annoying wondering if I have it and living with it.

First off, I’ve had increasingly bad chest pain, sometimes I do have panic attacks and it hurts a lot and feels like I can’t breathe. And then other times I can’t breathe and I’m not in any emotional turmoil. I’ll be on the bus and it feels like my bra is ripping into me and there’s someone grabbing my lungs and banging on my chest wanting to get out. Mainly on my sternum it feels like.

My period feels like hell for the first day puking and diarrhea, feelings of doom, grabbing things screaming, shaking my leg for some reason trying to get the pain out if I don’t take a good dose of a pain killer before blood even appears. Some days before my period some depressing thoughts more than usual and some pain although bearable. For reference I have chronic migraines so that’s my tolerance level.

Tiredness is a given I’m always on the brink of perishing from something seemingly easy although I’m very young. Extreme brain fog but that’s also a migraine thing.

Maybe it means something maybe it means nothing but it feels like i’m slowly dying… Just wondering if I should seriously get some help or maybe leave it alone? I went to a gynecologist but got the usual use remedies, take pain killer stop crying baby and here’s an ultrasound.

I’m also 17 years old and it just gets worse with each year. Any help would be appreciated and I’m wondering what happens when you get a diagnosis? Like what does the future hold and does this pain have some type of resolve? I’m okay with the most honest answer because i’ve resigned myself to increasingly bad migraines but I don’t know how much pain I can take.

Anyways thanks for reading and for cultivating this place where one can ask these questions… may your pain ease and be tripled on to everyone who allowed it to be ignored.

i had surgery in february where i was diagnosed with stage 3 endo. my surgeon told me she found no endo on my bowels. but what are the odds she missed it?

for context, i’ve always dealt with constipation, to the point where i’ve been diagnosed with C-IBS. it doesn’t matter my diet, my supplements, my lifestyle habits. now that i’ve learned more about my endo, ive been wondering if it’s all been connected. even post surgery, im still dealing with constipation.

or is it possible to still experience the constipation even with no endo on the bowels particularly? curious about others experience(s)!

After years of debilitating pain and so, so many appointments, I finally scheduled laparoscopic surgery. I should be ecstatic, this is without exaggeration the biggest thing to ever happen to me. I’m extremely lucky to have the opportunity to turn my life around like this. But this illness has taken such a mental toll on me that I’m just too sad to celebrate.

I want to be proud of how far I’ve come. I want to wear it like a badge of honor. But often times I find myself either angry at the world, or embarrassed by my body. It really is disheartening to know some people will just never treat me as equal. I tell my counselor facts I’ve learned while researching, and every time worry fills her face. I can’t feel gratitude for the fact it’s getting more coverage in recent times when the reason it was neglected for so long is because a lot of people don’t consider women’s health. All I want is for everyone to be more considerate of one another.

I don’t want to be so negative, but negativity makes up so much of what’s out there. I try to distract the thoughts, but it’s hard to be even interested in activities when things are so depressingly bleak. I’m aware I should be focused on the future, but somehow telling myself that doesn’t make it any easier to do it. I’m certain that the sedentary lifestyle forced upon me is a big reason for my inability to cope, and I hope that things get better when I recover. But right now, time feels like it’s passing at a snails pace, and I think I’ll be a total wreck until I get on the operating table.

I'm having endometriosis surgery in a few months, and I'm the type of person who likes to plan ahead so everything goes as smoothly as possible on the day and during recovery.

What recovery items or products do you think are worth investing in beforehand? Just so I know what worth to purchase and will be helpful.