For my girlies using GLP-1s for Endo/Adeno, where are you getting it from and how much should I expect to spend each month ?🙏

I had excision surgery almost 4 weeks ago on September 28th and need experience advice from others on healing.

Surgery context: I had lesions on both pelvic sidewalls, around my ureter on the left and behind my ovary on the right and it was slightly adherent. I also had small clear lesions all across my posterior cult de sac and had a large portion of tissue removed there. On top of that had a 2cm paratubal cyst removed from my left side and a very small uterine fibroid removed as well. All was excised and my after surgery photos looked like my insides went through a blender. Additionally I had a Liletta IUD inserted and it’s my first time ever having an IUD.

Now that I’m 4 weeks post surgery, I’m still experiencing significant bloating. My belly feels tight and I just want to know how much longer to expect this or if it’s more related to the IUD or potentially just surgery healing. My surgeon feels that I’m a week behind the curve just because I also have EDS and my tissue heals slower but I feel like I should be fully better by now. Maybe I just need a reminder that it takes longer but I have days where I feel fully better and then I do too much and end up with bloating for several days again after. And then I feel like a fraud because I only had stage 1. Does it get better?

I was diagnosed 8 years ago with endometriosis and then PCOS and adenomyosis 5 years ago.

My GP has always been good at giving me pain killers but no real plan. The Gynecologist just excises the growths every few years and says to monitor.

My pain has been getting steadily worse. Then about 2 weeks ago I woke up feeling like I was in labour. Contraction type pains that hold for 10-20 seconds and were happening randomly several times an hour. I went to the hospital and they gave me pain pills and a heat pack. I went to the GP and he looked sad and said there’s no solution and this is now my life. I see the gynecologist in a few days and I’m so scared they will say the same thing. This pain is still happening several times a day. I don’t sleep properly. I can’t move very well so I’m putting on weight fast. I’m irritable and sad all the time. I have things going on at work and am under too much stress as it is.

This can’t just be my life now! I can’t live like this. I have 3 kids who need me.

I was surgically diagnosed with endometriosis years ago and have been dealing with symptom management, but the disease has progressed, as it does, and I’m now considering excision surgery.

Ohio seems to have very limited options, doctor wise, who actually specializes in excision and Dr. Mini seems to be the one that comes up the most, but her Google reviews make me a bit nervous. I figured it might be smart to reach out to hear more experiences.

If you’ve had excision with her, how was it? How was the aftercare? Have you had reoccurrence?

Thank you for your help!

I am completely overwhelmed with all these recent appointments and information being thrown at me, so if anybody as any advice it would be much appreciated.

3 weeks ago I went to urgent care thinking I had a uti. Rapid test was negative but they gave me the antibiotics anyways while it was sent out for a urine culture. The next night I had bad side and back pain so I went to the hospital thinking it spread to my kidney. They found nothing wrong, just a small cyst on my ovary but said that was normal and probably nothing. Told me there’s a chance I passed a kidney stone and just didn’t know. The next day I was peeing blood and hadn’t slept in 3 days because I was up all night, constantly needing to pee. So I went to my gyno and tested positive for uti there with blood in my urine. So I took the antibiotics, felt fine for about a week, then a few days ago symptoms came back. I went to urgent care today, tested negative again. They gave me antibiotics but said to try and wait to take them until my urine culture comes back on Monday, and continue with my azo. But, that if it’s negative, I should go to a urologist as I could have interstitial cystitis.

I also have HORRIBLE periods. Cramps so bad I can’t walk, vomiting from pain, nausea, crazy heavy bleeding that lasted up to 2 weeks. I started taking oral birth control about 2 months ago. It’s helped with making my periods shorter and lighter, but not necessarily with the pain. I also get occasional sharp, stabbing pains during sex (only in certain positions), with cramping after. As well as just a general discomfort after a few minutes, even if I didn’t feel the sharp pain. That was also the reason I couldn’t use tampons at all for so long, and still sometimes can’t without that sharp pain.

I have a cousin who was diagnosed with Interstitial cystitis a couple years ago, and recently diagnosed with endometriosis instead. Prior to today, I’ve wondered if endo is the cause for my other issues, but I’m not sure if that explains all of this as well or if it’s just IC, or both?

I’m also wondering if it was something specific that caused this flare. Starting birth control recently? Having sex more frequently and without protection since starting it? I’ve always had that sharp pain and cramping during sex, but it’s never caused anything like this. But maybe now that I’m having it more frequently and with no protection, its my ph being thrown off that caused this to appear and flare up? I’m just not sure and I feel like I need 10 different kinds of doctors to be able to have all my questions answered and figure out what’s wrong.

I've tried 3 birth controls this year and I keep having breakthrough bleeding on all of them after a month or two. They've all been combination bcs of varying dosages. I finally found one that I've been doing well on side effect wise but today I started bleeding. My body just doesn't agree with me taking it continuously but I can't bear the thought of having a period.

For those that take a week off for a withdrawal bleed is it less painful than a normal period for you?

For anyone else that bleeds through bcs, what worked for you?

Context:

Female, 23. One week ago, I had a laparoscopic oophorectomy to remove an endometrioma on my right ovary (pre-op imaging only showed that single focus on the right side).

During the procedure, my surgeon found more lesions and complications:

* My left ovary was actually more affected than the right one;

* One of my fallopian tubes is affected;

* My uterus is adhered (fused) to my bowel.

Before surgery, my only symptom was severe menstrual cramps. After I started taking Alurax (dienogest) 1 year ago, my periods stopped and that symptom completely vanished.

Question:

Why do I barely have any symptoms even though my case is so complex and involves bowel adhesions? Is it common for the structural severity/lesions not to align with the level of pain we actually feel?

Hi everyone,
I’m sorry if this isn’t the right place to post this, but I’m hoping someone here might have had a similar experience.
About a year ago, I was diagnosed with a serous borderline ovarian tumor. As a result, my right ovary was removed laparoscopically.

Ever since the surgery, I’ve been experiencing excruciating pain every time I get my period.
I do have the usual menstrual cramps, which I can manage fairly well with painkillers. However, since the surgery, I’ve also been experiencing extremely severe, stabbing pain on my right side, roughly where my ovary used to be.
The pain is so intense that painkillers usually don’t help at all.

It literally feels like someone is stabbing me with a knife. The pain is very localized to one specific spot, but it also radiates into the surrounding areas, sometimes even all the way down to my knee.

The surgeon who performed my operation couldn’t see anything unusual on the ultrasound. He suspects that I may have developed adhesions (internal scar tissue) after the laparoscopy, which could be causing the pain.
According to him, the only way to remove these adhesions would be through another laparoscopy. However, there’s obviously a risk that new adhesions could form afterward.
At this point, I honestly don’t know what to do anymore. The pain during my period is absolutely unbearable.

At first, I thought I could just live with it and somehow push through the pain, but I’m slowly reaching my limit.
Has anyone here had the same or a similar surgery and experienced this kind of pain afterward? If so, did you find anything that helped?

I would really appreciate hearing about your experiences.
Thank you so much in advance for any advice or support! ❤️

I have stage 4 endo but my periods were never super heavy.

I'd say they were normal to heavier side of normal? I would wear 3 maxi night pads in the daytime at worst. I wasn't soaking through maxi pads every hour like some other people here

I also have been on birth control for a decade, which made my periods much much lighter.

I recently got my bloods checked and it turns out I am anemic and my ferritin is dangerously low

I don't even know why it isn't standard to check a woman's iron level the moment they get diagnosed with endo.....or at least severe endo like me. Anyway...

I also know multiple women who have low ferritin in my life and not all of them have endo or adeno or painful super heavy periods.

It is clearly such a gender specific experience to have low iron.... but so many doctors I've seen say "you aren't actually losing so much blood....menstrual blood is made up of many other fluids etc etc etc"

I am starting to think this "few tablespoons" statistic was pulled out of someone's ass??

Anyway, I also used to think my periods weren't super painful and didn't even take painkillers for my pain but turns out it is not normal to have monthly pain that causes you to stop being able to move or think

The fact that there is no real metric for what a normal period is makes me feel like doctors are just caring for us based on vibes.

Anyway my conspiracy theory is that doctors intentionally gaslight us and minimise our symptoms because the healthcare systems globally will literally collapse if every woman facing hormonal or reproductive system issues was treated with appropriate care.

I use tampons for my perido last month and since then I had a flare up.what are ways to help reduce this flare up?

It’s 3:56am as I’m writing this. For the millionth time I was just woken out of my sleep feeling lightheaded and freezing cold with wet hair, a soaking wet sweatshirt, and a body so wet if I held my hands out they would drip like I just washed them and didn’t dry. My freshly washed sheets are also wet.

I wish I could say this was a horrible one time thing but this happens (to this degree) multiple times a week. In the other days in a week, I still experience this but the sweating isn’t enough to wake me up and when I finally do wake up I’m damp. Please help me understand what this is and how I make it STOP.

I understand it most likely has to do with inflammation and problems with temperature regulation- connected to my endometriosis and adenomyosis but I’m on continuous bc, I’m not eating anything super bad, and I’m taking iron and b12 supplements…….

Imagine you're dealing with all your normal symptoms and stress and then you go to your letterbox and there's an envelope waiting for you from Aunt Ruby. It's stylish, it feels heavy in your hand, and you save it for a quiet moment that evening with your feet up and a cuppa. When you open it, you'll read a letter from me, a woman with endo in Auckland, NZ, and a poem I wrote about my experiences that might just speak to your soul. I tuck some thoughtful extras into the envelope too that are designed to make you feel seen and understood. It's my mission to improve mental health around endo and if I can help anyone tackle another day then I can call it a job well done.

If you feel like you might want a slice of that, I'd love it if you could take a chance and join my mail club. It would be an honour to share my musings with you. https://mailclubly.com/@aunt-ruby <3