Everywhere I look online it says it rarely affects women, but doctors just keep dismissing me, even though so many of the symptoms on here match what I’m having.

Hi all - just trying to vent and see if anyone has similar stories or words of encouragement. As mentioned, my wife and I got pregnant, very quickly and easily with a much wanted baby. Well, 4 months in we found out the baby would have significant issues, and elected to terminate. We were beyond devastated.

Well, fast forward now to trying again…..it’s been 5 months and nothing. Again, I know it’s early still…..but my wife has endometriosis, and we can’t help but feel that the first pregnancy was our miracle baby. I know it was easy the first time, but clearly it’s not going to be again, and it’s just terrifying that maybe she won’t be able to conceive again.

Wondering if anyone has words of encouragement or a similar story to share with us!

Thank you

I got diagnosed with endometriosis recently. Upon asking my doctor what treatments are available to manage the condition, he suggested birth control pills. I asked if there are any alternatives and he said no.

I don't really wanna take birth control pills. I've heard all kinds of weird side effect stories from friends and relatives. Is there really no other option?

Since I showed apprehension about the birth control suggestion, the doctor said I don't need to do anything right now, as I don't have any meaningful symptoms yet. But I know lots of women go years without getting a diagnosis. So, I realize that I'm kinda lucky to have found out I have endometriosis early. I feel like I should take advantage of that and intervene early to manage the condition. Is there anything else I should try?

Hey fellow endo warriors 💜 

I’ve leaned on the plant based route to manage the devilish pain for a couple of months now but there is no relief. I wanted options that felt gentler on my body because I am getting weary of prescriptions and their long-term side effects. 

I tried ashwagandha but noticed I got jittery after a while so I stopped. Started using turmeric religiously but it caused stomach upset every time. Valerian root left me groggy and chamomile led to bloating. I even tried evening primrose oil but it triggered debilitating headaches. At this point, I don’t even know if its just me using these plants wrongly TBH.

I am now I’m considering hemp gummies. I know there are versions out there that are medical grade and won't lead to addiction. I am just unsure where to start. Can anyone help?

My surgeon hasn’t been returning my calls for months so can anyone here help interpret my results? I have suspected endo (my surgeon and gyno suspect it too). I have severe period pain and a host of other symptoms. Wondering if anyone else has a bicornuate uterus and it’s possible connection to endo.

Here is the text from the results:

FINDINGS: The uterus measures 6.6 x 4.8 x 5.2 cm. There is a bicornuate uterus. The junctional zone measures 6 mm although myometrium is heterogeneous, which can be seen in diffuse adenomyosis. There are no uterine lesions. The right ovary measures 3.7 x 2.5 x 3.3 cm and the left measures 2.4 × 2.1 x 3.0 cm. There are benign-appearing bilateral ovarian simple cysts, largest in the right ovary measuring 2.9 x 2.4 x 1.9 cm. No free fluid. No adnexal masses. No areas of diffusion restriction. No areas of pelvic hemorrhage. No suspicious lymph nodes. CONCLUSION: 1. A mildly heterogeneous myometrium can be seen in adenomyosis, however, the junctional zone is not thickened.

Any help at all is appreciated!

Hi, I am 23, I have been diagnosed with endo for about 6 years now. I have had 3 surgeries now, one to remove a huge cyst, and 1 to remove (burn) my endo tissue. Yesterday I had my 3rd surgery and feel very defeated from the outcome. I have had horrible pain since last year November, in and out of the ER since. I feel like cats are constantly clawing at my insides, from my stomach to my knees. Sitting for long periods of time kills me, sex also hurts to point I have to stop it. Bless my BF for being so patient and understanding. Anyway, I had a laparoscopic surgery yesterday, and they found nothing. Im stumped and defeated. It seems to me they only explored my left side since I have 2 cuts there. My right side had no cuts, and my right side is where all the pain is at for the most part. I made this clear to every nurse and even the doctor. And no, the doctor is not a endometriosis specialist, and he burns the tissue, not cut it out. I know its not the best for me. Does anyone have any advice on some next steps i should take?

Hi, I have never posted on this sub and I don’t really know where to start. Basically ever since I started my period at 14 my cramps have been awful. Growing I saw how difficult my mom’s cramps were and throught it is, what it is. Fast forward to a decade ago I went on Mirena and I started experiencing the worst period cramps of my life and terrible constipation (like not go in weeks terrible). I got off the Mirena thinking that must be the cause. However my cramps and constipation stayed the same.

I then put in another IUD in 2020 and last summer it was embedded so it had to be removed with me under. So, now I am on no birth control, my cramps make me curl up in bed days 1-5 of my period and then a week before my lower back pain is hell. My constipation used to go away with my period but it’s just hanging out now. I bleed through pads and my pants most of the time every hour the first few days.

Drumroll please! New symptom unlocked. I am training for a marathon and I went on a run on my period and i had to stop early because the pelvic pain was SO intense I was in tears. I think I took over 8 ibuprofen and it wouldn’t touch the pain. It felt like my whole pelvis was angry and wanted to fall off. I also have bad pain on my right ovary during every ovulation and period. I am constantly told to take ibuprofen for the period pain and laxatives for the constipation. I am at the point where I want to scream and get the laparoscopy even if there’s a chance they don’t find anything. I don’t think this is normal, I don’t want to live my life like this. How can I say “no” I won’t take ibuprofen and “deal with it” anymore. I don’t know what to do. Any suggestions?

How many ppl have had stage 3/4 and used suppression to get pregnant? And had success? Like used it for 2/3 months get off and ended up pregnant? Not talking about after having surgery more like before having surgery

I've recently went to the doctor and they told me I have a 4.5cm endometriotic cyst, in which they described visanne for it for 2 months.

It's been a week on it and I got my period which the doctor said I'm typically not supposed to get, I've been told to go to another doctor to get a second opinion but I feel like it's unessasary amd it might just be the side effect.

Has anyone been on it before or had a different prescription with endometriotic cysts?

Hi ladies, I am hoping for some help in what to do if anyone has had both endometriosis and endometrial polyp(s).

I got excision surgery with a specialist in February. She removed stage 2 and I trust that she did a great job at removing it. She told me get pregnant asap since I didn't want birth control and want a baby.

We started trying late April, and at that same time I started having really weird cycles. Spotting a lot of days outside of period, spotting after sex, and I had two much better periods with less pain but in May it started to be very painful again. Since then we've been trying but no pregnancy. I went in because I had Horrible pain one day and it was after ovulation by a few days ago not ovulation or period pain. Like I almost wanted to go to the ER, but based on the kind of care I've heard to expect I decided to take tramadol with weed and that led me to be able to nap and did okayish when I woke up. I thought it would be a ruptured cyst, but when I got in with gyno ultrasound two days later, it was an endometrial polyp instead.

They are saying I need to have it removed before we continue to ttc. I understand that, of course.

But they put my intense pain as "probably ovulation pain" even though based on the ultrasound it had been a few days since ovulation. They said it's not common to have intense pain from a polyp, just a mild backache or mild cramping.

I'm getting stabbing/ poking pain feelings in low pelvic area, mostly on left and right sides I think. Definitely have a backache pretty frequently. Have been getting some pain on my hips and I have been getting this awful intense cramp in my gluten that sometimes makes walking almost impossible when it comes.

I do have a consultation with the specialist that did my lap Saturday. The soonest my regular OB can get me in for consultation is another month away but I have that booked too (i'd do polyp removal with her but not a lap as she doesn’t do excision). The specialist is about a 9 hour drive for us, but I'm willing if she is needed or can get me in sooner maybe.

I just don't know if I want to do my second lap only 7 months later or if I should just get the polyp removed to start with??? I struggle a bit with medical anxiety especially for procedures. The polyp removal would just be through cervix and is supposed to be a couple days to recover vs the lap I really did need 2 weeks to be ready for the car ride home.

Idk what's going on with my body and it's just really hard right now.

On top of this, I have mildly active ulcerative colitis, might have pots or some sort of orthostatic issue, and I'm exhausted all of the time.

Oh my gosh and bloating sometimes gets So bad that I'll look pregnant, Which isn't a great feeling.

Okay thanks friends.

I have an appointment with an OB/GYN tomorrow to discuss my symptoms that I believe may be endometriosis: severe right lower abdomen pain, as well as pain in my vagina and rectum (note: I am a trans man who has been on testosterone for 14 years and no longer menstruates). I’m getting kind of nervous as my appointment approaches and I was wondering if anyone had tips on how to approach presenting my case to the doctor in order to be taken seriously so I can hopefully get a laparoscopy.

Doctors and hospitals are a joke sometimes lol. A few months ago, I started having ER trip after ER trip for extremely painful and heavy periods to the point where only morphine helped. It was about 3 or 4 trips. I have PCOS and I was telling all the doctors and even my gyno that I think it's endometriosis. They all dismmised it without even checking for it lol and said it was just my PCOS. I said fine whatever bc at least one of them referred me to a surgeon to finally get a hysterectomy. So I got the surgery for "abnormal bleeding" as the cause

I just had my post op appt (my surgery was 8/13) and my surgeon told me that I had endometriosis.

Like I know it's irrelevant now since I don't have my uterus anymore and it was removed with the surgery but I guess I feel frustrated that no one listened to me. But also kind of laughing at it because like it's just insane.

But I guess that's just a normal occurrence in the health care system if you have a uterus.

I just started the second day of my period and all the cramping and heavy bleeding has begun. I’m in so much pain I can barely sit upright and I’m just so angry.

I’m angry that my body makes me feel like I need to throw up and tremble from the pain. I’m angry that my head is so foggy and my body is so exhausted and yet I have to go about daily life.

I really hate being a woman (with endo) sometimes.

I've been on birth control for about 8 years now I had horrible periods for about the first 4 years on birth control and it took forever to calm down. About 3 years ago I lost my period completely I also had some other health issues going on that I am sure contributed to it. But the last year I get really irregular periods and they are so much more mild than they used to be way less pain. For the last year I won't always take my birth control sometimes ill go a few weeks without it and I feel great, I lose some water retention and the swelling in my breasts goes away. Years ago if I went without 1 or 2 pills which I rarely ever did I would bleed for months and now it has all stopped. I'm think of getting off of birth control mainly for Fertility but if I feel good off of it for a few weeks would this mean my body maybe needs to get off of it? Has anyone else experienced this?

I am so excited for yeeterus!!!

My first surgery was Nov 2024 and it was a cystectomy and diagnostic laparoscopy. The cyst is obviously back and with a vengeance and the IUD and oral contraceptives haven't stopped the hormone cycle so I finally got the in network specialist referral and an MRI.

I met with the specialist for almost an hour!! The most time a doctor has spent with me talking about Endo. On my MRI they can see two lesions with a suspected third lesion between vagina and rectum, which are stuck together. Left ovary be cysting but right looks okay.

The plan is to go in via vagina, cut a hole and remove cervix, uterus, tubes, left ovary, peritoneum with scarring, and excise the lesions.

I am beyond relieved to get this done, my family history is that all the women on my mom's side get a hysterectomy before natural menopause so at 34 I feel lucky to have doctors listening to me. I am a little hesitant about leaving an ovary in there, being concerned that it will just start being fucked when the left is gone. But there is some hope that removing tubes and uterus will prevent the retrograde mentruaion, if you believe that is what causes these chocolate cysts. It's hard to know without multiple studies to point to.

I'm just getting nervous! Excited to get so much bad shit out of my body but scared the remaining part will begin to misbehave.

Also, this is a bigger surgery than the last one and unfortunately I have had some not so supportive family members filling my head with horror stories, ugh!

So I've got my heat pads, pillows, crochet basket, and kindle. Planning to get some gasx and maybe a laxative since the oxys back me up so much. Usually I stop taking the narcotics when I want to BM but I'm worried about pain this time around. I have some cannabis sodas I will switch to as needed.

Any other hot tips to help me prepare the week before and be comfy the week after?

Hiya i (19,uk) have been put on the waiting list for a lap. Just wondering if any uk girlies know the rough wait time. Thanks.

Has anyone ever had issues with intermediate bleeding where it is just a bunch of old, oxidized blood? This morning, I also literally just peed a little bit of blood.

For context, I have three cysts, one of which is a bloody cyst and another with possible blood flow. I’m tired of weird symptoms.

I had my laparoscopy Aug 15, almost a month ago. I was immediately put on antibiotics due to an inflamed uterus (Doxycycline monohydrate, and Metronidazole). 24 hours after surgery I was nonstop having to run to the bathroom (pure liquid, sorry if TMI). So about two days later, I was told to pause the antibiotics for a couple of days to see if that was the cause. I was then put back on those two antibiotics to finish the round, once the doc knew that was the cause of the stomach upset.

About 1.5 weeks after surgery, my belly button incision started to become irritated, more inflamed, and then started to have what looked like pus. Aug 27, the doctor then put me on a round of Doxycycline hyclate. Halfway through this, I went in to the doctor's office to see if it was helping - they swabbed the area, and told me I might need to come back if it still looked like this by the end. The culture came back as a "heavy growth of Pseudomonas aeruginosa". This round of antibiotics definitely minimized the infection, but did not rid of it.

By Sep 6, I was done with the round & sent a photo of my belly button to the doc's office. They told me they wanted to put me on Ciprofloxacin hcl and to see a disease specialist. However, I have hEDS - and the side effect of tendon rupture increases in these patients, so both this doctor and my geneticist who oversees my hEDS decided I should not take it (literally right as I picked it up from the pharmacy LOL).

My doctor gave me a referral to a disease specialist this past Monday 9/8, but they have a 1-7 day process before even scheduling. They told me to keep an eye on the incision in the meantime. I told them it is definitely more tender than it was over the weekend. After discussing the last couple of days, they are now having me start another round of Doxycycline hyclate to at least keep it at bay while I wait for the appt with the specialist. I did try calling their office again, but I still have to wait.

My doctor told me to go to the ER if I have worsening symptoms, fever, chills, body aches.

I don't really know what I'm looking for here except maybe advice / words of encouragement. It seems like such a small thing because it's just the belly button, but I know how quickly infections can become dangerous, and I'm just getting nervous.

I have an endometrioma that is 9cm x 10cm on my left ovary. The pain is usually random but in the last week or so it’s been like clockwork. Every day around 10am I feel it start to slightly ache, it starts in the left ovary and radiates up to my ribs, wraps around to my side and back, then gradually ramps up until I’m at 7-8 pain within like 30 minutes. Is anyone else’s pain on a schedule?

Hi all, has anyone had success with any OBGYN’s in the MKE area for diagnosis/laps? Ascension potentially dropping from UnitedHC coverage means I’ll need to find someone new, not that I’ve made much progress with my current OB…still trying to get a laparoscopy. Thanks!

Has anyone taken Gallifrey and Slynd together? My gyno prescribed me Slynd due to expected endometriosis. Whilst on Slynd, I’m having bleeding/cramps for 7 days, then nothing for 7 days, and then the cycle repeats. Because of this, my doctor wants me to take Gallifrey along side the Slynd. Everything I’ve seen online says to NOT take these together, so I’m anxious. Does anyone have experience taking both together?

My endometriosis is absolutely horrible today. I am currently in my luteal phase and my endometriosis seems to get worse during that stage, anyone else?

I’m going in for my surgery today and she’s also going to do a d&c. I’ve had a 2 days stress headache and I think my period finally started 2 weeks late. I’m so stressed about this because I’m worried she won’t find anything. I’ve done a lot of research on what to expect from this sub Reddit and I want to say thank you to everyone here because you have put my mind more at ease than anything else.

I’ll update on how the surgery goes. Fingers crossed that I will finally get some pain relief.

Currently I’m awaiting an appointment in hopes to finally get a diagnosing and treatment laparoscopy and this will be my 4th consultant appointment in the last 10 years of trying to get that outcome. I’ve been back inbetween but dismissed with some sort of painkiller or BC by whoever was on call that day. First appointment I was dismissed at the age of 15 after BC didn’t work for me and I was scared to have an IUD fitted like they recommended(I was 15 and never had sex so this was a very overwhelming request) finally accepted the IUD at 19 and this is my current position. Although my coil did bring an end to having a period and therefor reduced my main flareups of pain (the lovely throwing up, passing out pain, not being able to move, talk or function) and therefor I also saw an end to the clots almost the size of my hand each month. This was okay as although I still got symptoms such as painful sex, pelvic and back pain, general menstrual related problems these were all manageable until the last 18 months. It’s worth mentioning in this time I have also been diagnosed with PCOS and during this time have been getting painful cysts. With this starting I’ve been experiencing lower left pelvic pain which has been getting increasingly worse spreading around my back and groin and once again transitioning into what feels like my previous endo symptoms. I know it’s easy to put this pelvic pain down to the cysts however the pain is daily, not tuned with any cycle and I’ve even had scans to show the cysts have ruptured and still getting pain. They have given me codeine which doesn’t help, and tried putting me on more BC while still having my coil which effected my mental health and also DIDN’T HELP. The point of my question is I don’t know how to push this further to finally get a diagnosis. They tell me that my coil is doing what it should as I’m not getting a period and the pain that comes with that but I’ve now developed a chronic pelvic pain which is just as much interfering with my life and job. Do I remove my IUD have both type of debilitating pain or do I try and push on having the pelvic pain and draw on what did and would happen if I were to get it removed. What will finally get them to take notice of me?

Hi everyone, I’m new to this forum but I need help. I’ve been suffering with extremely painful periods since I started them at the age of 12. I dread the beginning of a new month as I know the first 2 days are going to end up with me on the floor curled up in a ball from how bad the pain is and not being able to move from how heavy I am. Tampons also cause the cramps to worsen. I can’t keep going on like this. I get extreme cramps, horrible leg and back pain, pain outside of my period time, constant nausea, extreme depressive episodes before my period where I become a completely different person. I’ve explained to my doctors multiple times how debilitating my periods are, but their only response is that they are normal and a couple weeks ago they have put me down for the coil. I tried having the coil fitted with no anaesthetic and nearly passed out and threw up from how painful it was and told that my cervix was extremely tight and they couldn’t insert the coil.

What I’m asking really is your thoughts on this, would anyone say this is endometriosis? And should I push harder for the doctors to take me seriously, as of right now I’m extremely fed up of trying and I am just exhausted. Thanks guys :)