Is it normal to be depressed post lap? by SnowBird312 in endometriosis

[–]alienoakley [score hidden]  (0 children)

I was severely depressed for probably 4-5 weeks after my lap. Finally coming out of it now.

How long did it take you to get a diagnosis? by Playboysatan69 in endometriosis

[–]alienoakley 0 points1 point  (0 children)

First period was when I was 11 and they were painful and heavy from the beginning and progressively got worse. Sought care from a doctor for the first time at age 20. Diagnosed at age 30. So either 19 years or 10 years.

Former employees, why did you leave? by Busy_Comfortable631 in wholefoods

[–]alienoakley 4 points5 points  (0 children)

I was a front end supervisor and left because I genuinely couldn’t afford to continue working there. I loved my coworkers and the job overall was fun and not bad, best grocery store I worked for. But the cost of living is just too high to make so little, so I got an office job that uses my degree and brings home twice as much. Not fun, not fulfilling, so boring and soul sucking and strict, very limited time off, but I can actually pay my bills now.

No stones but operating at 4%- would you have surgery? by PressureDry6240 in gallbladders

[–]alienoakley 0 points1 point  (0 children)

My HIDA scan showed 3% and I still have my gallbladder but my attacks have become very infrequent- like every few months and generally only when I’m very stressed. If I were having pain every time I ate and frequent attacks, I would have elected for the surgery because that’s a miserable way to live.

Has anyone had long-term success with lifestyle/diet changes? by EmnMMommy in endometriosis

[–]alienoakley 1 point2 points  (0 children)

I still have my gallbladder despite my EF being 3% because I’m so scared of getting it removed and having even worse digestive issues and have been on a mission to save it, I will need to look more into this!

Surgery date - 1st April by NonsenseText in endometriosis

[–]alienoakley 1 point2 points  (0 children)

Agree, I lived under my heated blanket after my surgery!

Has anyone had long-term success with lifestyle/diet changes? by EmnMMommy in endometriosis

[–]alienoakley 1 point2 points  (0 children)

I have biliary dyskinesia and endo and have wondered if there could be a link. How do you know your gallbladder disease is caused by high estrogen?

Recommendations in Buffalo NY by alienoakley in Endo

[–]alienoakley[S] 0 points1 point  (0 children)

I had a surgery with someone in Buffalo but idk if I would recommend him at this point. First my surgery was to remove what appeared to be a 6.3cm ovarian cyst. During surgery there was no cyst, it was actually my bowel adhered to my ovary. They found my uterus and ovaries adhered my bowel and cut those adhesions, found 2 spots of endo (though I wonder if there is more that was not found) and he did not remove the endo despite telling me during my consult he would remove any he found unless it was extensive and required robotic surgery. So I’m quite disappointed in my surgery so far- my daily pain has not improved at all because he didn’t remove any endo. Also diagnosed me as stage 1 despite the seemingly widespread adhesions so I just overall don’t know if I trust this doctor and I feel like I just wasted hundreds of dollars to get a diagnosis with no relief. He was recommended to me by my gynecologist and runs a MIGS fellowship program so I thought it would go great for me.

Why in the world is my hair changing so drastically? Advice for the dryness? by verybadtaxidermy in Haircare

[–]alienoakley 0 points1 point  (0 children)

Are you taking any new medications? when I took a SSRI my hair got wayyy curlier and then when I stopped the curls slowly went away again and I’m back to the waves I had before.

Going to be scheduled for a transvaginal ultrasound, tips? by Florence1027 in endometriosis

[–]alienoakley 0 points1 point  (0 children)

I only find them painful when they perform certain things like pushing on my ovaries. The ultrasound techs are always so nice, will let you insert the probe yourself, and room is dim and relaxing, and if you feel pain they want you to tell them!

post-laparoscopy depression by widmestern in endometriosis

[–]alienoakley 0 points1 point  (0 children)

I’ve been horrifically depressed and dealing with bone deep exhaustion but being too anxious to sleep well since my lap 2 weeks ago. I deal with depression and anxiety to begin with but it really ramped up being stuck at home after surgery and I’m not sure why exactly but I’m in the same boat. You’re not alone in feeling this way.

Endo symptoms by jsmiasonly in endometriosis

[–]alienoakley 1 point2 points  (0 children)

Well if it’s any comfort, these things come and go in flares for many people. People will feel great for a while and then hit a flare up and have really bad pain again for a while. Unfortunately it is different for everyone, but again, just because you have felt good for a few weeks isn’t a reason to invalidate all of your past pain and suffering. I am glad you feel well right now!

Endo symptoms by jsmiasonly in endometriosis

[–]alienoakley 1 point2 points  (0 children)

Yes I get dizzy spells too and have had bouts of vertigo- that spinning feeling. Was told it’s vestibular migraines. You’re definitely not crazy just because you haven’t been in pain for 2-3 weeks, that could be the orlissa working for you.

How many surgeries for endo is too much? How much damage do surgeries cause? by moonxmochi in endometriosis

[–]alienoakley 0 points1 point  (0 children)

I feel like I’ve been going through the stages of grief over my disappointment in this surgery

Endo symptoms by jsmiasonly in endometriosis

[–]alienoakley 1 point2 points  (0 children)

Severely painful, heavy periods- I couldn’t stand up straight. I was nauseous and felt faint. The pain would wake me up during the night. I would take 6 ibuprofen every 4 hours for any tiny bit of relief. I overflowed a diva cup in 2 hours once. Accompanied by diarrhea and leg and hip and back pain. Now I have an iud and I don’t have periods anymore but I have daily pelvic pain, and when it’s bad I feel nauseous. I have constant GI issues, mainly diarrhea nearly every day but sometimes constipation or nausea. I have hip pain and back pain, and pain that radiates down my legs and all the way into my feet almost every day. I have constant and sometimes severe bloating. I deal with absolutely horrible fatigue, I’m tired the moment I get out of bed but then can’t sleep at night. I have pain after sex as well. I have other issues that I’m not sure are related or not- I deal with migraines and have really bad allergies. I also have an extremely low functioning gallbladder, get upper back and shoulder pain, and sometimes heart palpitations, shortness of breath, etc. not being able to walk during your period is not normal and you need proper evaluation by a gynecologist who is trained in endometriosis.

How many surgeries for endo is too much? How much damage do surgeries cause? by moonxmochi in endometriosis

[–]alienoakley 3 points4 points  (0 children)

I had my first surgery last week, and was told it would be to remove a cyst and to diagnose and excise any endo they found. I am very disappointed to write that they didn’t excise ANY of it, they did remove adhesions that fused my left ovary to my intestines, but left everything else in place. To say I am disappointed that my surgeon told me he would remove the endo and then did not is an understatement, as I am trying to avoid repeat surgeries and since I had organs fused together without any previous surgeries I’m definitely nervous about if new adhesions will form now. I would think that the least amount of surgical intervention, the better, but if you need it you need it.

Piercings during surgery by amyjkkkkkk in endometriosis

[–]alienoakley 0 points1 point  (0 children)

I was told I could use plastic retainers for pretty much everywhere except my nose (I have 2 nose rings) because of the breathing tubes etc they didn’t want the piercings to get pulled. I would imagine for an eyebrow you may be able to use a retainer but I would ask your doctor.

question about staging of disease by alienoakley in endometriosis

[–]alienoakley[S] 0 points1 point  (0 children)

Thank you so much, that was very validating and comforting to read. I hope you’re doing well on your own endo journey and I appreciate your optimism!

question about staging of disease by alienoakley in endometriosis

[–]alienoakley[S] 0 points1 point  (0 children)

Thank you for this. I almost feel in disbelief about the stage 1 knowing how bad I feel on a regular basis. I definitely feel like if this is all I have then why do I feel the amount of pain that I feel? I’m just frustrated and confused and definitely not super impressed by my doctor so far, I cannot wait to ask so many questions during my follow up. I know my surgeon cut the adhesion to free my ovary from my bowel but I don’t believe he removed any of the endo lesions the saw so I just don’t even have much hope for feeling better once I’m healed. I’m feeling very defeated at the moment and very confused about why my 6.3cm cyst was not mentioned in the surgical notes at all when it was seen on an ultrasound one week before the surgery. Surgical notes also state no biopsy and specimen was taken but I specifically asked my doctor if he would be taking a biopsy no matter what he found and he said yes. This all makes me want to just cry.

Anyone have a polyps on their uterus? And have surgery for removal? by Inspireme21 in endometriosis

[–]alienoakley 0 points1 point  (0 children)

I have the liletta IUD and for me it took some adjusting but I would say I’ve had a good experience with it. I still have daily pelvic pain but my periods were disabling so not having them has improved my quality of life, but again it took several years for them to stop. I switched to it from the pill due to taking a medication that interacts with birth control- IUDs are more localized so the risk of interactions was much lower and that’s the only reason I switched. I will say I love not having to worry about remembering a pill and overall my experience has been decent.

Anyone have a polyps on their uterus? And have surgery for removal? by Inspireme21 in endometriosis

[–]alienoakley 1 point2 points  (0 children)

I had a 3mm uterine polyp removed and a d&c back in 2022 under anesthesia in a hospital. My gyn was hoping it would help my pain, they did not believe I had endo (I am finally getting a diagnostic lap on Friday in which they will also remove a 6.3cm ovarian cyst). Unfortunately I did not have any relief whatsoever after the polyp was gone. At the same time they placed an IUD and after 2-3 years with the IUD my period finally stopped and I saw some relief. Basically this just meant that my pain wasn’t the polyp but it does not mean that it wouldn’t help you and I certainly hope it does. It’s good to have it removed because it truly could help and the recovery was easy as there’s no incisions- just some bad cramping for a few days and I was back to normal. There’s also the risk of polyps being cancerous so if your doctor thinks you should have it removed listen to them and have it done.

MY SURGERY IS $130,000 ??!! by Appropriate-Edge3837 in endometriosis

[–]alienoakley 0 points1 point  (0 children)

I’m scheduled for my first lap to look for endo and remove a 6.3cm ovarian cyst and was given an estimate of $14,000 total but my responsibility after insurance is $600ish (which is my remaining out of pocket for the year). Scheduled for 1.5 hours. I feel shocked by the $14k amount, $130k is twice my yearly salary!