u/LostInMyOwnSentence

When someone is actively going through infertility, no one would dare to ask when they are having babies or even bring it up without the other person bringing it up(atleast it’s known you shouldn’t). But then when a woman has endometriosis where they have known lower chances of getting pregnant (which has been shared openly) while also actively being on BC because not being on it is hell on earth so getting pregnant is not in the picture right and may never be in the picture. Why do people think it’s okay, knowing your situation, to say “babies when” “what about babies”? Yes I am actively making a decision but I’m doing it for my own health.

What about my healthy and sanity ? Anyone else?

**after thought edit
Thank you for all those responding sharing their similar experiences and thoughts. This can be a very lonely disease but when we share experiences and feelings it makes it just a little be easier 🤍 appreciate you all for sharing and being vulnerable!

Context: 30 female, confirmed Endo, hyper-mobility possible hEDS, Migraines, Anxiety, ADHD, lipedema, overweight started wegovy on 3rd week .25mg pen and feeling AMAZING note also on continues Slynd

I’ve been struggling with weight loss especially going on norethindron (+10lb) with lots of inflammation since my Endo symptoms took a huge turn Dec 25’. I had surgery in January to remove two ovarian cysts and my body felt like it shut down after that. A simple trip to the grocery store was a huge task.

Had chronic 24/7 cramping
Endo flares regularly
Constant anxiety (racing thoughts goes with my ADHD)
Worsening ADHD
Body pains and aches
Horrible back pain
Migraines

My daily pain for the most part is gone, my inflammation is lower, my body overall barely aches, I have so much more energy. My racing thoughts/random anxiety much better and overall feel calmer and my ADHD is incredibly better and no migraines. Also down 6lbs half way through week 3.

At some point I plan to sit with a doctor to talk about this as is it inflammation decreased, regulating my blood sugar levels, help regulating my hormone levels or a combination of them all. Honestly an amazing drug I wish I had tried it a year ago. I was so afraid and I deeply regret not trying it earlier.

This is approved via insurance for 12 months as a weight loss aid. For those micro dosing for endo what dosage are you on and how often do you take? U.S people where are we getting it from if not approved by insurance.

Just ranting because I’m so tired of this disease. I know the bad pain are cramps and in my case nerve pain but as my Endo has gotten worse, which I now have to skip my periods, the fatigue and full blown body aches like I have spent the day hiking just full body soreness and exhaustion always. Oh and god forbid I’m out and social for a bit now I feel like I hiked that mountain with a 30lb vest on.

All my blood work came back “normal” minus my HDL (good cholesterol) being low which is common with inflammatory conditions/diseases.

I’m starting wegovy to try to loose a bit of weight (which has been impossible lately) and hoping it helps with inflammation and this pain. I’ve read alot of good reviews here.

Sharing experience for those struggling with medicine and going to hormone/BC route.

Trying to find the balance with BC/hormone medicine has been wild. For years a combination pill was fine but within the last year my endometriosis which had been “manageable” (mostly just symptoms around ovulation and my period) began to flare and I developed estrogen issues with crazy pains as it evolved but focusing here on estrogen issues.

From my research I realized I was having estrogen issues. First I said to my “endo” doctor I was having allergy related symptoms while on the combo mini pill. He said that’s not a thing and just changed me to another mini pill. I was preparing for my wedding waking up daily for 2 months not knowing if I’d feel like I had the flu or normal that day. Finally spoke to my gyno about this and she said that’s definitely and validated everything I already knew.

Endo can create its own estrogen so adding more estrogen to the mixture, can worsen things. Especially if your body is not properly releasing estrogen through the liver/detox. There is also a connection with mast cells that also react to estrogen and Likely why I was feeling like I had the flu all the time. Another example of this is period flu which I had experienced previously.

I was switched to norethindrone which was amazing at first because I no longer had histamine issues outside endo flares. My biggest symptom besides the pain was waking up every day, sneezing sore throat, stuffy not something great when you’re dealing with pain on top of everything else. I literally spent my Wedding morning drinking hot tea because I had the biggest sore throat. It was my Endo all along but worsened by the combination mini pill. Switching to progestin I do think was the proper move for me now it’s just trying to figure out which one.

The bad side effects…
All was great until the side effects of hopelessness and needing to cry all the time and literally feeling like I was losing my mind. I never understood people when they say birth control makes them crazy until I experienced it. It is unexplainable. My 5 mg dosage was halved and I still felt like I was experiencing anxiety and have now switch switched to Slynd so I will have to provide an updated after a month or two.

I’m sharing my experience because this is not something I believe it’s talked about enough. Why are endowed patients given a combination mini pill containing estrogen when we already have too much estrogen in our system? For years, this is what I was on since I was 14 till around 28. I took a break for about two years and then went back on it around my wedding.

We need more education from our doctors how to balance medicine surgery and overall holistic health. I think it’s crazy that it’s not talked about.. I have learned so much from research but the Dr. Brighten show has been amazing. She has a blog/podcast/supplements which I’ve found helpful as they are grouped and bring down the number of bottles I have to travel with.

Since taking her supplements, my ADHD has felt better which was influenced by hormones, my histamine issues I felt better, just still figuring out the hormone medicine.

Happy to answer any questions I’m an open book

(Additional context I am getting my excision surgery in September, I was previously diagnosed by a doctor when they were removing two ovarian cysts who said he would also remove my endo as a “specialist” but didn’t 💀. I am hoping post excision surgery, I can get off birth control and just look to manage my hormones naturally.)

Is it just my tight psoas or it’s routed in endo?
Starting to question if excision surgery is really going to fix things or is it something else.

Stage 1-2 Endo (surgery confirmed endometriosis but not staging)
uterosacral ligament endo
Continuous birth control

I have pain different than how many describe and it’s making me question is this something else or does it all route back to Endo.

When I got a period I would have pain with varying levels majority of my cycle other than 4-5 days after my period.
- pain pooping right before my period (come close to passing out a few times)
-ovulation pain
- ovulation migraines
- severe pain from groin wrapping around into hips going into legs
- pulsating vaginal pain
- electric zaps butt and vaginal
- back spams
- severe cramping

Now without a period I still get what I’m assuming are endo flares.
1st cramping
Sometimes then a migraine
Groin pain will start in right groin hip area
Vaginal pain like it’s sore
Walking and sitting becomes painful
Pain radiates down into my knee and ankle like I injured something

Then the backpain starts and it goes from a oh my back is sore to I can not straighten my back and sometimes I can’t walk or sit up without rolling to my side

The back, hip and radiating pain is truly so debilitating when it’s at its worst I struggle to walk and when it’s lower like a 5/6 it’s so chronic with no relief for days it’s drives me nuts.

Going to pelvic floor therapy and I know I have an extremely tight psoas muscle on the right but it seems to react hormonally.

Meeting with a new specialist soon and I am really preparing for this visit.

One realization is I’ve literally never been offered pain medicine (outside of surgery). I’ve expressed ibuprofen and Tylenol barley does anything for me so I rarely take them and I have expressed my specific hate for codeine and percs in relation to post surgery pain managment which of course still get prescribed them. Then I explain CBD/THC is the only thing that works and I get looks.

I’ve been offered birth control and medical menopause as means of pain managment. Is this normal? I’m just learning now people are offered nerve pain medicine which my worst pain is sciatic/femoral nerve pain. Like how odd…

Anyways give me your recommendations. I’m looking to get the fuck off birth control post proper excision surgery. I have endo of the ureteral sacral ligament.

Dealing with a lot of chronic pain that CBD/marijuana helps with. With marijuana being legalized is it even worth getting a medical card anymore? CBD products that are good are so costly but I heard with a medical card you do save some money. Those who have gone this route have you found that you are actually saving money? I am a regular user of CBD products at least once a day.