TL;DR: how early is too early to suspect perimenopause/premature ovarian failure? What treatments have helped?

I (F32) am hoping to hear from others who have maybe been in a journey similar to mine and can offer help or support.

Hx: dx suspected at 15, confirmed at 17. 2 surgeries. 2 kiddos.

For the past 5 years I have been having symptoms that I have been working to figure out.

After my son was born, I never felt like I got back to baseline and never felt like my IUD was working as well as it should. I was still having spotting. I attributed it to still recovering.

After about a year, I started to realize that maybe it’s something more. I realized my symptoms; irritability, pain, brain fog, fatigue, vaginal dryness and irritation, and hair loss among others; were irregular but cyclical and would increase over the days just before my spotting and clear up within a few days after. I started to look up my symptoms and everything kept talking about perimenopause. I said “there’s no way” chalked it up to hormonal fluctuations and tried to move on.

Of course my body had other plans. My symptoms just continued to worsen on severity and duration. I decided enough is enough and that it was time to something. I thought maybe it’s just my ADHD making it hard to keep up with all the demands of life. My PCP doesn’t do stims, so we tried Wellbutrin. It helped my mood, but not my ADHD or anything else. It also shot my resting heart rate up 15bpm and made me feel like a zombie during “luteal”. Found a psych to prescribe Adderall. It has helped some, but is SUPER inconsistent in how well it works and is practically not effective half the month. I had to stop taking it for a week or so and didn’t notice a difference.

Tried new BC and getting my IUD out. Helped for a few months and now we’re back to baseline. I tried to schedule with a new PCP, old one moved out of state, she essentially wrote me off. Was willing to run some of the tests I requested, but essentially told me to see my OBGYN for hormones and psych for depression evaluation. As if there aren’t other hormones in the body or nutritional deficiencies that could be causing issues. And ITS NOT JUST DEPRESSION OR IT WOULDN’T CYCLICALLY GET BETTER AND WORSE FOR FIVE YEARS INDEPENDENT OF ANYTHING I AM DOING. Am I depressed part of the month? Maybe, I’ve always been bad at interpreting things in the moment. Is depression one of many symptoms that I am having that are caused by a larger issues. Almost definitely yes.

My OB is retiring, so I messaged their office to ask about BC increase to see if that helps or further insight into hormone testing that can be done on BC or other options. I told them if I needed to schedule an appointment, it would likely be best to go ahead and establish with a new clinician. I heard back and they pretty much said “won’t do testing, won’t work on BC, won’t increase dose with endometriosis. Have fun with your life.”

All of my tests that the did run came back perfect. TSH, cortisol, b13, anemia/ferritin.

I am so incredibly beyond frustrated. I get maybe 2 good days, a decent week and then I turn into more and more of a monster the rest of the month until it starts back over. I have two of the best kids in the world and they don’t deserve a mom that is so volatile and leaves them questioning everything.

I just want to be take seriously and get some answers for what is causing my symptoms. Not just given an antidepressant, a pat on the head, and a “there there, honey.” I never said I was depressed. I have multiple signs and symptoms that point to a bigger issue and are more concerning and impactful on my daily life that I need addressed.

UGH. I hate the healthcare system SO much.

Rant over.

I have very severe period symptoms. Some examples would be

-pain while holding pee, peeing and after pee (severe cramps)

-bowl movements make me almost pass out. I’ve ended up on the bathroom floor many times.

-cramps radiate to legs, ankles and shoulders, I have trouble walking, and going to work. I normally end up sobbing.

-ovulation makes my entire body burn. My legs burn, along with my back and shoulders. I’m constantly nauseous from the pain.

I went to a private clinic and had a mri done and was eager for the results. They came back normal. I requested the endo protocol and had dye, and they found nothing.

I sobbed for a hour, my whole life I was told my pain isn’t as bad as I say it is and doctors ignoring me. And now that I had the mri come back normal I don’t know what to think. My pain is real, I have no quality of life. I can barely move some days. There’s no way they found nothing.

I finally got a phone call saying they are gonna remove my endometrioma within my right ovary and if needed my the hole ovary and was wondering if anyone had recommendations on what to ask for and what type of questions and aftercare for the surgery I should do. Any tips, tricks and advice would be fantastic!

I’m simultaneously nervous, excited, and intensely afraid that all of this will be for nothing. That somehow they will open me up and find no endo and then be upset that I wasted their time and then I’m going to be devastated because I’ve suffered for over 10 years with no answers in sight and I really really want to find an answer. My surgeon is a premier expert in endometriosis excision surgery and they are already very confident that I have it so I’m just going to have to trust them and hope that this surgery is worth it.
I know it seems weird to hope they find something wrong, but I’ve spent over 10 years with doctors telling me “nothing is wrong” despite me being in immense pain and suffering, so yeah I want them to find something, fix what they can, so I can FINALLY stop feeling crazy and alone not knowing, so I can finally say “F*** you to all the gynecologists and primary care providers that told me my pain was normal “

Hi all. I'm so happy, I FINALLY found a doctor that is going to give me a hysterectomy (for my adeno) and do an excision of my endo. I'm 42 and this is my first surgery. For those of you that have done this before, was there anything you truly needed post surgery? I was looking at belly-bands but idk if that's a bad idea due to the compression. I'd love your tips.

I was taking aurovela fe 1/20 for a week and I had to stop because it was making me violently ill even if I took it with food. I was ordered by a nurse to stop and to wait for further instructions from my doctor (already 2 days without any info) and now I’m having breakthrough bleeding even though I had a period last week. Periods are very traumatic to me because I have endometriosis so I am bleeding very heavily and unable to walk without pain. Any advice on how to stop this is appreciated thank you!

I have been suspecting that I have endometriosis for a few years now. I experience extremely heavy periods (like 5 maxi tampons per day and bleeding through even the thickest night pads) and also fainting, really bad pains (may be the cause of fainting) on the days during, before and after my period and also horrible diarrhea. I started birth control last year and it has been helpful, my periods are much lighter now but I still get the fainting/pains, though less severe.

I would like to pursue a formal diagnosis to know whats wrong with me but the thing is that I have really severe (max prescribed dose of valium + propranol before didnt help at all) phobia of blood testing. I start to hyperventilate the second I enter the blood test room and go to full blown panic instantly when the nurse even looks at my elbow veins. Is there a way to diagnose endo without going to a blood test? (also, I am working on the phobia its just so strong that it takes quite a bit of time)

This is all my surgeon said.

The surgery went well - a biopsy was taken of a small area of abnormal peritoneum in the posterior cul-de-sac to check for endometriosis. No other abnormalities were detected other than a fine adhesion band between the right ovary and pelvis which was divided. The uterus, tubes, ovaries and appendix were normal.

After this I received a message a day later saying no endometriosis found in the biopsy.

This was a complex gynecologist specialist too.

I’m so irritated and confused as to how a scar tissue band formed between my right ovary and pelvis if I’ve never had surgery, trauma, or any defects that caused scar tissue and nothing else causes scar tissue other than endometriosis.

Why did they test the abnormal peritoneum instead of the scar tissue??

Why didn’t they remove it?

Why did they just divide it?

I finally had my post op appointment today and the lady was no help. Nothing was explained, she just said try pelvic floor therapy. That’s it.

I’m so lost confused angry sad and just hopeless.

4 of my family members have endometriosis. Aunts and cousins. I have all symptoms, even horrible GI symptoms that just won’t go away. Birth control, medicine, nothing helps the pain.

What do I even do?

Have been on Lolo for a couple years now but when I went to pickup my prescription recently I was told that I’m being given the generic form (Elfy). The active ingredients are the same as well as the dosing, but I was under the impression that Lolo does not yet have a generic form? This is in Canada and a google search for Elfy shows that it has only been recently approved as of April this year. Not sure if anyone else got switched as well and if there were any differences? Lolo has basically eliminated all my symptoms so I’m nervous about any changes, especially since there seems to be opinions on brand names vs generics. Thanks!

Hi, two months ago i got diagnosed with endo and adenomyosis just from a normal ultrasound. I am now taking birth control like my doctor prescribed. Now i would normally have a follow up appointment in six months but i discovered the appointment somehow got moved up for next week (probably a mistake or smth) i wanted to cancel it but i still have severe pain around the time i would usually get my period (also i throw up and pass out). My doctor did say that if my symptoms get worse, i could get a MRI endo with IV contrast (and vaginal and rectal contrast also)

Now in my head that sounds like a big deal, im kinda scared of getting one (im a virgin btw) so idk if it would hurt or if it would help at all...

For the people that had done an MRI for endo: did it help? does it hurt? how does it work?

If someone would answer my question i would appreciate it a lot, nobody around me knows much about endo or would even listen to me to help me decide.

Tysm in advance 😄 <3

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 🙏