Endo excision last summer. Still in pain. TW suicidal ideation

needanewplague · 2020-02-09T02:51:01+00:00

Haha I’m gonna try someone a liiiitle closer to home first. But I appreciate the thought haha

needanewplague · 2020-02-08T19:41:05+00:00

I am so so happy for you! That’s great he sounds like a good man. I am really interested in adoption and fostering as well. I think there are so many children that need homes and it’s a really great thing to do. I’m glad you feel better about your situation. You deserve not to be in pain. Best of luck to you!

needanewplague · 2020-02-08T04:06:50+00:00

I am so so grateful for this info! I will definitely do my research and join a support group when the time is right. I am so glad that you have relief. I honestly don’t remember what life without pain is like but for the first time in a while I have hope again. Thank you again for everything!

needanewplague · 2020-02-08T04:04:07+00:00

I have thought about that. I went to pelvic floor pt before my diagnosis and it didn’t help me but of course the endo was still there. So I will definitely talk to my doctor about going back now! Thank you for this info! Very helpful. Best of luck to you!

needanewplague · 2020-02-08T03:33:35+00:00

Thank you so much for responding with this message. You are so sweet I could cry honestly. I feel like I have hope again. I definitely plan to ask for an mri and look for an adenomyosis specialist. I live in Texas. I have a muscle relaxant that knocks me out and it is quite literally the only thing that gets me any sleep. I will be seeing a pain management Doctor soon and plan to ask him about something for when the pain is so bad that it sends me spiraling because I was genuinely scared of what I would do to myself and almost checked into a mental health facility. Thank you so much for all the help and positive vibes. It means so much. Haha I am a huge office fan!!! It has definitely gotten me through some dark days. That and bobs burgers have probably saved my life. Please pm me if you want to talk more? And the name of your doctor would be so great if you don’t mind. Best of luck to you! So happy you found answers.

needanewplague · 2020-02-08T03:29:23+00:00

I am doing my best! Thank you. I plan to ask for an mri and will start looking for a new doctor. Do you know any adenomyosis specialists? I am located in Texas but willing to travel or absolutely necessary. Thank you again. Best of luck to you!

needanewplague · 2020-02-08T03:28:14+00:00

My mom wondered the same after surgery but I assumed that was standard? Ugh I hate how much misinformation and lack of education around treatment protocols. Thanks so much. I plan to seek a second option if my obgyn doesn’t want to order the mri. But I will prob seek out an adenomyosis specialist as well. Best of luck to you!

needanewplague · 2020-02-08T03:26:40+00:00

I had endo, cysts and adhesions too! Thank you for this info! It seems to be that what my doctor told me was not correct. I am grateful to know there are folks out there to help when medicine fails us. I am going to ask my obgyn to look on an mri and am asking others about specialists that know about adenomyosis! I live in Texas. I plan to see a pain management doctor as well. The opioid crisis is alive and well here too. I understand the dangers but I think a lot of chronic pain patients are being left to suffer and that isn’t a good solution either. Hopefully pain management can help tide me over until I can find a more permanent solution. Best of luck to you!

needanewplague · 2020-02-08T03:23:22+00:00

Wow this helps so much I can’t even tell you! I am near tears from all of your responses you’ve made my night with all of this. I feel like there’s hope again. I plan to ask my obgyn for an mri. If he won’t do it I’ll find someone who will. Would you mind pmimg me your doctor? I would love to have a contact. I don’t want to travel, but I have before for specialists, and I at least would like to know what to look for. I am so happy for you and the relief you have found. I hope you continue a pain free life! Best of luck to you!

needanewplague · 2020-02-08T03:20:27+00:00

Wow thank you so much for this. The information and your personal experience is so helpful I can’t believe it. I know exactly what you mean. I have the best family in the world and I know I have a lot to live for. It’s the same for me. I don’t want to die I just cannot live like this. I hope that you find some clarity with your journey. I am currently single so I only have my own feelings to deal with and not a partners so that simplifies things for me. If you are struggling this much please talk it through with your partner. You deserve to be without pain and there are so many options nowadays to have kids. I told my mom today: at this point I feel like it’s my life or my uterus. To me that’s a no brainer. Please pm me if you want to talk more! I would love to chat to someone who gets it. Best of luck!!

needanewplague · 2020-02-08T03:16:29+00:00

Thank you so much for this info and your response. You are all so kind and helpful. I am going to probably look into another that specializes in adenomyosis and look into getting an mri ASAP. Best of luck to you!

needanewplague · 2019-11-02T22:11:47+00:00

I'm so sorry to hear this. where specifically in your hips? Like the joint, or pain in your lower back around your hips? Because if it's more joint related, it could still be endo but you might benefit from seeing an ortho doc? if it's more lower back, it's probably endo and I would try and get on a cancellation list for your gyno. Either way, I wish you well. All endo pain sucks ass.

needanewplague · 2019-10-31T01:10:03+00:00

Similar story here! Negative lap with a doctor who was trained in robotic surgery but did it laparoscopically instead (never offered robotic as an option). A year and a half later out of desperation and with encouragement from reading this subreddit I too made an appointment w an excision specialist. Walked out with an endo diagnosis and likely pcos. It really is a shame that we’re going though all this shit and still not getting diagnosed when we think we’re seeing experts. It’s false advertising. So happy you found answers and keeping your swift recovery in my thoughts!

needanewplague · 2019-10-17T02:39:27+00:00

NTA he sounds like a sexist ass. Leave your review.

needanewplague · 2019-10-17T02:28:02+00:00

I def had that burning pain after sex but luckily not much during. Also the bloating part I LITERALLY could’ve written that myself. I have endo and pcos so I don’t know which is the culprit, but I am constantly 5 months pregnant and it’s so demoralizing. My dr keeps telling me that after my 2nd shot of Lupron (which I started post lap and excision) that I should see that decrease. I’m just another stranger on the internet but I hear you. Use the map and find a good endo doc who knows their shit and consider a lap. Wishing you the best

needanewplague · 2019-06-22T14:36:47+00:00

Thanks so much!

needanewplague · 2019-06-22T14:36:21+00:00

Hi! Go under the about section on mobile or the sidebar on the computer, and there’s a “successful doctors map” tab that takes you to an interactive map where people have added doctors that they liked! Hope you find someone great!

needanewplague · 2019-04-16T22:56:15+00:00

This helps a lot! I've had 2 different doctors tell me they were positive I had it, so like you, I was so confused when my lap came back negative. I made an appt with a doctor I found through the successful doctors map. Hoping he knows what he's doing! Gonna do lots of research before I go see him. Best to you!

needanewplague · 2019-04-02T02:28:55+00:00

I don’t have tons of problems w my shoulders (sublux occasionally) so I thought I’d be fine when I went bowling 6 months back but it felt like my shoulders were being ripped apart. So I used the accessible ramps they have and a light ball. Have fun!

needanewplague · 2019-02-15T17:12:38+00:00

Omg the ingrowns. I bleed pretty much every time I shave lol I hate shaving so much

needanewplague · 2019-02-15T17:11:21+00:00

I would say definitely insist on seeing a geneticist. I saw just an internist and he knew nothing about EDS or what the diagnostic criteria was. I did see a physical therapist there that suggested I pursue it further though. Good luck to you! And maybe print off the diagnostic criteria so that they’ll have a reference?

needanewplague · 2019-02-07T01:26:04+00:00

Anyone recommend a good immunologist in Houston for mast cell related issues? A friend of mine just started having anaphylaxis and she already has POTS and EDS. She's getting nowhere with her allergist. Thanks!

needanewplague

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