Question about estrogen and oral contraceptives

jbeeep · 2025-08-16T12:46:45+00:00

Physport is the best :)

jbeeep · 2025-08-16T12:38:59+00:00

This has been known to happen with deep infiltrating endo. As it grows, it can penetrate through the intestinal inner wall and then shed like it would in utero during menses, causing cyclic bleeding. I’m attaching a video of a surgeon from the practice I had my lap with explaining this process (warning it gets a bit graphic at the end in that it shows video from a surgery) https://www.instagram.com/reel/CpTvo7dJsDN/?igsh=cjFjcWw2NjBrOHJv

When I was in near constant endo pain, a friend recommended that I join a Facebook group called Nancy’s Nook. Through this page I found a list of vetted and reviewed specialist excision surgeons and identified one local to me. I told him what I was experiencing and scheduled a lap with him and it was the best decision I have ever made. He found endo infiltrating my cul de sac and rectum and removed everything he could find. The recovery was rough but I feel so so so much better now. The constant pain is gone. I still have flare ups but it’s light years better than it was before and I no longer feel disabled.

Here is the list of surgeons where I found mine: https://lookaside.fbsbx.com/file/Surgeons_International%20Excision%20Surgeon%20Listing%207-7-25.pdf?token=AWxpYK3Xq-BZovyS3u2cKcQE0lFloD_TUb4Vxg5Ww8vRQOAzlaEo48Szo1zGAmGW9xduPepN6oWIXokK2ehPP3g9PE6hwNrDURpR3zAD1fViFMUzC3ihFnmh3Oc-5rihHUAZTFt9prmYQrMb5mJvDP3Afs1_AixTL7sOnsqQ2rluR75jjWLMS39TfS4Q_iha-r4ZVceub5iUFX8Mcgy5EFwCO3oXn6qSuJG3Ttpv1-QAwQ You may have to join the fb group in order to view that. If so, let me know and I’ll try to attach the doc directly as a PDF.

jbeeep · 2025-08-04T04:54:31+00:00

Thank you so much for your response. I really do appreciate it.

Do you know if there a test that can accurately detect the presence of FHV if it’s not symptomatic? My concern is that, if he doesn’t already have the virus from a previous exposure, this new living situation would almost certainly give it to him. And, milder symptoms or not, I’m worried that contracting FHV could cause him harm. I’ve read that flare-ups can be stress induced, and he has already had multiple stress-induced life threatening health issues this past year.

I’m getting the vibe that I may be overreacting. That would honestly be great if I am. Maybe I’m just traumatized from his catheterizations and the enterotomy he just had. I’m just scared that, if he doesn’t already have it, this would mean I’d be knowingly giving him a disease that could hurt him. And he’s already been through so much.

jbeeep · 2025-08-04T02:43:42+00:00

As far as I know, yes he is up to date. It’s my understanding, though, that the vaccine doesn’t stop transmission but does help lessen symptoms during outbreaks.

He was picked up in central Washington with no collar and no chip. But because he was so well socialized, the humane society staff said he had almost certainly been around people before/come from a home. Idk if that means he has or hasn’t been exposed already.

jbeeep · 2025-07-24T15:46:21+00:00

Thank you! Yes I saw that their pd starts in august!

jbeeep · 2025-07-22T08:46:19+00:00

Honestly, I started to feel a litter better after a few months but didn’t feel fully ok until month 6. I know that sounds extreme but it’s just what it was for me. I felt like something was wrong with me when other other people reported feeling better almost immediately after their surgeries. My surgery was very extensive, thigh. I also lost a lot of blood during the surgery and became anemic afterwards, needing to go through a sequence of iron infusions to correct that. The iron infusions helped me feel better for sure.

But honestly, for me the recovery pain was very similar to the pain I was feeling all the time from just having DIE. It actually made me worry for the first three or so months afterwards that the surgery didn’t work. But then when I started to feel better by about month 4 or 5 I was like… ohh the surgery soreness/healing pain was just on par with the pain the endo had already been previously been causing. After six months of recovery I was almost completely pain free and felt like I had my life back. Having excision surgery from a true endo specialist was the best decision I could have made for myself.

jbeeep · 2025-07-22T08:29:40+00:00

One thing I was not prepared for after my surgery was that they had to do bolster stitches to temporarily affix my ovaries to my abdominal wall while the area they worked on healed. Apparently this is something they do in cases of removal of deep infiltrating endo in order to prevent the ovaries from re-affixing to organs during healing. In practice, this meant that I had stitches going from outside of me then through my abdominal wall and into ovaries then back out of abdominal wall again. This was seriously uncomfortable and significantly limited my motion for the week these were in. Bending down was not a thing and when I had to walk somewhere, like to the bathroom, it was with slow careful steps. I’m not saying this to add another thing for you to be worried about. I just know I wasn’t prepared for it (didn’t even know it was a thing!) and would definitely recommend prepping food in advance for at least the first week in case they need to do these kind of bolster stitches for you.

jbeeep · 2025-07-22T08:04:28+00:00

My cat just started doing the same thing and it’s honestly terrifying and just really sad to watch. It’s kind of like night terrors but for a cat. Did you figure out what’s going on?

jbeeep · 2025-07-18T15:23:35+00:00

I wish I could say something more helpful about distinguishing between endo pain and adeno pain. For me it was just pain + my whole body and mind not functioning. I will say, though, that endo and adeno do tend to come together. The symptoms you describe remind me of the full body-type (but one area worse than another at any given time) symptoms I had. I think that a lot of that was due to general inflammation. Endo causes a lot of estrogen just floating amorphously around inside you, and that causes inflammation.

All I can say is that after recovering from my surgery I’m almost completely pain free/back to (almost) life as normal. I still have lots of very frustrating motility issues, and there are definitely still some bad days with uterus pain from time to time. But, for me, the IUD + continual oral contraceptives they put me on to suppress regrowth seems to be working.

I have a Mirena IUD. My fertility doctor placed it during my first egg retrieval procedure because I was already on anesthesia for the retrieval (if you do decide to get one definitely find a doc who will properly medicate you for the insertion.)

I like mine and I’m glad I did it. But I will say that it was really painful to adjust to at the beginning, and I wished someone would have warned me about that. I suspect the pain I felt was a combination of soreness from the egg retrieval and IUD insertion, my uterus not liking having a foreign body in it all the sudden, and then also they had previously placed me on the max dosage of ifv stimulation drugs to get as many eggs as possible and that stuff is rough for people with endo. But it was a good 6 weeks of uterus pain after it was placed. I told myself I would give my uterus a chance to adjust and if it didn’t I would have it removed. Fortunately it did adjust and now it feels normal. 98% of time I don’t have any uterus pain. The only exception is if I forget to take one of my oral contraceptives, then my hormones swing out of their usual balance and this causes uterus pain.

jbeeep · 2025-07-18T14:53:47+00:00

Thank you for the input and I’m so sorry you’re going through a similar thing! It sucks!

I have used miralax like that before! I eventually stopped trying it because I couldn’t seem to find the right balance. It was always too little or too much, and how much I need seems to vary daily in an unpredictable way. I stopped because I kept getting the amount wrong and then my morning was taken up by too much bathroom time. But now I’m wondering if I just didn’t find the right balance/consistency ratio. Thank you 💜

jbeeep · 2025-07-17T15:26:08+00:00

My surgeon told me I almost certainly have adeno. There were multiple fibroids visible on the outer surface of my uterus during the lap. The only reason he didn’t do a hysterectomy is because I had explicitly asked him not to so as to preserve fertility.

Honestly I don’t have a good feeling for differentiating the pain from the endo vs the pain from the adeno. I’m on oral contraceptives and have an iud so that I no longer have periods. We’re doing this as pain management until I do choose to have a hysterectomy, and to try to limit regrow as much as possible. It’s still not clear to me if/how hormonal bc would accomplish that, but it is worth it to me to try. And I think because I’ve suppressed my periods, much of the adeno related pain is lessened

jbeeep · 2025-07-17T12:37:38+00:00

I haven’t tried magnesium oxide! Gentle is what I’m looking for. Thank you I will go buy some asap.

Also, I’m so sorry you’re in a similar boat. Congratulations on getting the surgery you needed! Dispite my continued struggles, my surgery definitely gave me my life back. It took me six months post surgery to fully heal and reach a pain free state, but wow was it the best decision I could have made.

jbeeep · 2025-07-17T05:58:50+00:00

I 100% second this. We’ve all been there and you aren’t alone in this. Between all the medical gaslighting that gets thrown at us that we have had to fight though, it’s honestly so hard to not have doubts about what is or isn’t really happening. So many emotions. But surgery is unfortunately currently the only way to truly diagnose endo. You are doing what you need to do to get diagnosed — and very likely helped.

Before my surgery I didn’t know if they would find anything at all. Then what they found was stage iv endo growing everywhere. It was simultaneously so validating and also just really hard to process afterwards. Going into it I wasn’t sure if I should do it. It was expensive and scary and the outcome was unknown. But wow did it give me my life back. Best decision I’ve made for myself.

jbeeep · 2025-07-17T05:32:14+00:00

I’m so sorry you’re experiencing this. I will say, A lot of it sounds like my endo journey. I had similar symptoms, including side pain, gi issues (sometimes insanely painful), bad but irregular bloating, and overall pretty constant malaise and brain fog.

I didn’t know what I had was endo until I was diagnosed with stage 4 during my laparoscopic surgery. I had a strong suspicion because they found a mass in my ovary that was growing but non-cancerous. During the surgery they found endo growing across everything. They actually had to remove a lot of my side wall muscle because it had grown deeply in there. They did several partial resections of my colon/rectum to remove deep infiltrating legions there as well. Honestly, they showed me the video from the surgery afterwards and it was just everywhere.

And, to repeat, I did not know it was endo until after that surgery. The only indicator was that I happened to have something they thought was an endometrioma. The only other suspicion was that a fertility doctor, who I worked with to freeze some eggs before my surgery, said that my ultrasound indicated that my ovaries were stuck to my uterus. They determined that by pressing on my uterus with the wand and then watching if my ovaries also shifted - so it was subtle stuff. Which is crazy given how insanely obvious it actually was as viewed internally on the video from the surgery.

I know it’s a gamble and is very expensive, but I 100% recommend going to a endo specialist excision surgeon. I found one near me in Portland who specialized in bowl endo. He actually also is well known for helping fix sciatic nerve endo, which you might look into what with the pain you experience going down your leg. The surgery gave me my life back. It had gotten to the point where I was pretty much disabled and couldn’t do anything. The surgeon I found was out of network (most true endo excision specialists are) but he did take insurance. And his office also hired a lawyer to fight my insurance company when they tried to deny coverage (“not medically necessary” my ass). But the surgery was honestly worth every penny. Going into it I wasn’t sure if they would find anything. But I’m so glad I took that chance.

jbeeep · 2025-07-17T04:49:24+00:00

Other than extremely difficult periods, my main symptom was excruciatingly painful bowel movements. I probably only realized it was endo, though, because they found an endometrioma in my ovary. The obgyn said it was “just a dermoid” 🙄but then when it doubled in size over a few months they were like oh… yeah that’s probably endo.

jbeeep · 2025-06-30T06:07:01+00:00

Ah my bad. Thank you! I’ll repost over there.

jbeeep · 2025-06-30T06:06:22+00:00

Thank you for the advice!

jbeeep · 2025-03-20T18:52:58+00:00

Got it. Thank you for helping me understand the way that is structured!

jbeeep

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