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Invisible illnesses, endometriosis, IC and others.

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posted on Jun, 20 2018 @ 07:02 AM
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Ahhhh something I can relate to.

As a woman let me say it sucks sometimes especially when your Aunt Flo comes to visit BUT it's really bad when you have endometriosis. I have dealt with this since puberty. When I started my lovely monthly Flo I was SICK AS CAN be every month. Over the years I ended up in the hospital often being hooked up to pain and nausea meds. I was always dismissed as having bad cramps. No they're not bad they're horrendous and terrifying. Terrifying because you know every month you will feel like your insides are being tortured and ripped apart for 2-3 days, EVERY MONTH. Over the years I managed to find ways to help me cope and deal with it every month. My favorite place is a hot bathtub with unlimited hot water. OTC meds did absolute nothing for pain and things like midol only made me sick to my stomach even more. I do remember prescription naproxen in the late 90s helped tremendously but then it became over the counter and it did nothing. So from about 1999/2000 I just dealt with this pain and torture every month. I saw every doctor imaginable and it was always diagnosed as "severe or bad cramping." It was more than that and I knew it. It wasn't until 2003 that I was given somewhat of a diagnosis and even then it didn't do me any good because nobody knew what to do! All they did was prescribe pain meds, meds I knew didn't work. Over the years I became really good at managing my monthly torture sessions BUT when it came to work that's when I would panic to the point of anxiety.

I live in Florida (right to work state) and well nobody cares what ailment you have here you could be on your deathbed and they will expect you to come in! Just last year I had a job for 3 weeks before they fired me for being in the ER, good thing is I got the job I have now as a result so things work out right? I was in the ER for severe pain and nausea that was making me see stars. I couldn't get a signal so my mom called my boss to tell her where I was and she said,"but is she coming in after she gets out"? I couldn't even walk let alone drive or stand up! So yea she fired me on the phone after I finally left the hospital 6 hours later!

So needless to say my own personal hell has caused problems with jobs at times. I've had some very understand employers but most are not. I had a hella time at the bank. My boss was female and would say "oh I get it bad too and I am here with a change of clothes." I would look at her and think this isn't a competition on who has the worst time of the month. It doesn't matter what I say people always doubt and think you're just exaggerating. Let me tell you, I wish! I've had friends see me in my throws of torture and they were genuinely concerned. My friends BF, now husband, years ago wanted to call an ambulance for me because he had never seen me like that. I do a good job of hiding out in my home when it happens. If people could only see what I deal with maybe they would shut their judgmental pie holes. I had one employer write me up but my doctor at the time was livid he did so! So she sent him a not so nice letter stating I was under her care and that my condition was one where it requires me to go home or stay home at times. I was at work and around noon I had to leave. The torture was coming on and I knew I had to get home. I was white as a ghost and ready to pass out from pain and nausea. I left and he wrote me up for leaving. Well after he got the note from my doctor he removed the write up and never bothered me again about it. I've also had supervisors mock my condition when they find out because they claim they need proof. Now I know they don't need a damn thing, it's none of their business and I don't give proof anymore of a thing.


So at almost 40 I have been home for three days now. It's not been this bad in a very long time. I have insane panic because of work. My boss is pretty cool but he is male so I feel uncomfortable talking to him. I have spoken to the owners wife and she seems ok but I always have that doubting my mind and I feel bad when I have to miss work: I shouldn't feel bad because I can't help it but it's who I am. I don't have insurance which would help because I could have meds for nausea and procedures for the IC (bladder condition). I haven't had these procedures in years and it's catching up and making it worse. Sad thing is even if I could get insurance I can't afford it. My employer doesn't pay me enough to afford $300 a month for insurance. Let that sink in.....ridiculous if you ask me! The last time I had insurance I was able to get these issues looked at and managed and now almost 3 years with no insurance it's been crap! I could have two procedures done and one issue would greatly reduced. With insurance I could have my nausea meds that are like gold to me when it get the nausea that is so gut wrenching you see stars. So yea insurance......

I guess I just posted this more out of curiosity to see who else deals with such illnesses. It has been 25 years of this crap and it doesn't change and people still have their opinions. Anyone with an "invisible" illness will understand. It gets very frustrating when people don't understand and you feel like you have to explain yourself to death to them. I have tried not to explain myself but I always feel like I need to so people can get a grasp. It's draining!!

So yea....anyone else out there have similar problems? It's not ever month that this happens but you can bet at least one day a month I may need to leave or stay home. The fact it's been three this time is crazy and it's been since I had my last procedure done that it's been this bad. It's why I had the procedure done last time but alas with no insurance I'm stuck........




posted on Jun, 20 2018 @ 07:29 AM
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a reply to: mblahnikluver

I can't say I've gone through a similar ordeal ( im a guy ), but I know a few women that went through situations like yours. Endometriosis and bicornuate uteruses often go undiagnosed until there's a problem.

I also find that many young women tend to avoid regular gyno exams though until something is blatantly wrong. Birth control seems to play a role whether it be in exacerbating issues or actually using it to regulate them for what it's worth.

I wish you the absolute best.

edit on 20-6-2018 by AgarthaSeed because: (no reason given)



posted on Jun, 20 2018 @ 08:10 AM
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a reply to: mblahnikluver


First let me say, I am so sorry you have to suffer through this.

I had endometriosis, undiagnosed until I had a full hysterectomy. I was on birth control for 18 years and I had no pain really. The pain appeared in my 40s. Sometimes I couldn’t stand up straight, the girls I worked with would cover for me thankfully. It got so bad that I had to have a full hysterectomy. It was the best gift I ever got. Yeah, that’s how I view that medical procedure.

Like you I went a few years without insurance and that is sheer hell when you have endometriosis.

Do you make too much for a state health plan? What state do you live in? Research for options. If you can get the surgery, you will live a new life and love it. I still flip off that specific isle is the store when I walk by it with a smile on my face.



posted on Jun, 20 2018 @ 08:27 AM
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a reply to: KTemplar

Why thank you 😃 I'm glad you got some relief!

I had my tubes removed and it helped somewhat but with that came other issues like the insane nausea. I see stars and get very light headed.

I don't take the pill. I tried it years ago and it always made me sick to my stomach and it didn't do much for the pain. It's a crap shoot now with the IC interfering. I didn't have IC until after I had my son. For a year I had terrible pain and it was also dismissed as UTI's and it wasn't. I found a new doctor and the first visit I told her what was hapoening and she made me have some procedure done and in a week in was in the hospital having another one done. About 2 months later I had my tubes removed and a bladder prodcedire to help with the IC. The endo and IC seem to work together and it makes it even worse. I get so bloated my pants don't fit and I look pregnant and ready to pop! I changed my diet to help with the IC but even that doesn't help enough. I know my limits. Since not having insurance I can't get the bladder procedure done. I have looked into local medical assistance and Medicaid but was denied help because apparently I make too much money which is mind boggling since I make $13/hr and am a single parent. I can't afford the insurance my work has and yet these people seem to think I don't need help. Instead Florida is a terrible state for so many reasons. I found on place that helps people like me but not for the procedures I need due to the high cost. i figure I can get insurance with work again in January. I really can't afford the $300 monthly cost and it would cut into things like food and gas but I need it. It's crazy how having insurance is all I need and this is manageable now but without it it's like you said sheer hell.

My mom and aunt both had hysterectomies because of their own problems which I of course share! My doctor advises against it but I'm over it and I don't want anymore kids. What I want is to feel normal and if taking it all out helps then please by all means take it!



posted on Jun, 20 2018 @ 08:29 AM
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a reply to: AgarthaSeed

Thanks!

I've actually never seen endometriosis talked about like it is now. It still has a stigma to it because they're still figuring out how it works and what happens

Everyone I've known with it had different experiences.



posted on Jun, 20 2018 @ 08:48 AM
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oh no, i'm SO sorry!! I have it too. not as bad as you as I've never had to go the the ER or miss work, and Tylenol always works for the pain, and I've got a strong ass stomach - i literally have never thrown up in my life! It does get better, i'm 53 and with my last period I didn't have to take ANY Tylenol - that was a first - yay! i'm thinking my cycle is winding down and i'm so happy!! it was really hard when I was caring for my handicapped son who was total care as bending over was SO painful. lifting him was so painful. not being able to stand up straight, like the previous poster said was me, too!

for many years I thought it was back pain from caring for my son - that i had tweaked something, lol. but, mri's showed nothing. i found out when i was about 45 what it really is. the pain started when i was around 33. if i had been younger when i found out i would have had surgery because it would have made caring for him easier, but he passed a few years ago, and i'm so close to being done with my cycle, so i'm waiting it out.

i hope you get the surgery you need, if not, hopefully it will get better with age like it has me.



posted on Jun, 20 2018 @ 09:05 AM
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a reply to: mblahnikluver


Trust me when I tell you; like you, through the years, I had many tests. It just prolongs the suffering. I’m sending you a pm with some advice.

In fact, when I finally got a Dr to do the hysterectomy, she asked if I wanted to keep my ovaries. I was like No way. She kept trying to talk me out of it.

When you can get it done, have them take it all. They’ll try to scare you with menopause will hit early, yada yada.

Removing all decreases your odds of getting breast cancer also.



posted on Jun, 20 2018 @ 09:17 AM
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a reply to: knoxie

Oh I'm so sorry to hear about your son.


Yea I get that back pain too and it is not my back! I too use to think it was until they told me nope you're back is fine. The shooting back pain, you know what I'm talking about! I don't get it as much since my Fallopian tubes were removed an it's mostly on one side now vs both.

I remember having my gallbladder out after I had my tubes removed and I refused a pregnancy test. They wouldn't did it unless I took the test and I remember sitting in the same hospital a year before where they grilled me to make sure I knew taking my tubes out was permanent and I couldn't have kids....yet a year later I have to prove I'm not pregnant? I knew it was to charge my insurance and me, they finally did the surgery and made me sign some form I wasn't pregnant. I knew it as impossible for me to be pregnant, one I was single and two I had no tubes. I mentioned a hysterectomy to my doctor but she too mentioned menopause. I have 3 friends who had them done for similar reasons and take some hormones and say they feel better than ever and that it is a nice feeling not to be tortured monthly. I would love that feeling myself as well.



posted on Jun, 20 2018 @ 09:48 AM
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a reply to: mblahnikluver

My heart goes out to you... been there and done that. My daughter too. It's hell. Pure hell. And like you said, conventional doctors/medicine don't understand the condition, and there's really not much they know to do. And while I understand that they are stuck between a rock and a hard place, too many doctors have that infuriating combination of ignorance and arrogance that only adds insult to injury for the patient. Did I say it's hell???

In my case, the endometriosis eventually turned into uterine fibroid tumors -- 8 pounds worth! I looked 9 months pregnant! -- at which time I had a complete hysterectomy. Best thing that ever could have happened for me! Yeah, I was warned about being "jump-started" into menopause, and I was. But I took Estroven for about a year for the hot flashes and night sweats, and that was that.

Until you can get the medical help you need, some natural remedies might help. My daughter has found that taking turmeric regularly helps keep it under control; she also finds that castor oil packs with heat on the abdomen helps the pain.

One of my favorite sites for researching natural remedies is Earth Clinic (.com), and they have a page for Endometriosis. I find it a good place to start. Folks offer suggestions and tell what works for them and what doesn't. From there, you can further research supplements and treatments and any clinical studies and so on. The condition presents a little differently for everyone, and we all respond differently to different supplements. But maybe you can find something that rings true for you that you can follow up.

I wish you the best of luck. If I can help in any way, just give me a holler.



posted on Jun, 20 2018 @ 10:09 AM
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a reply to: mblahnikluver


I sent you a pm, I don’t believe the envelope is lighting up. As I just found an inbox message that I wasn’t notified of 😟



posted on Jun, 20 2018 @ 06:36 PM
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a reply to: mblahnikluver

Have you tried ketogenic diet to assist with endometriosis?

Have a google, it helps my mrs who also suffers with endo.



posted on Jun, 20 2018 @ 06:49 PM
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In my teens my period caused me horrible pain and heavy bleeding, every month. Doctor visits only pissed me off because all the doctors (men) told me it was normal and in my head.
In 1981 I was 18 and didn’t get my period for 6 months. I finally went to our health department and they sent me to a hospital for tests due to their concerns.
That’s when I found out about Endometriosis. I suffered through many surgeries to remove the Endo. My Endo even grew out of my uterus and up into my abdominal cavity.
The adhesions actually grew my stomach to my abdominal wall. Even my lung was adhered to my chest cavity once.
Doctors then didn’t really know how to treat it either. I took all kinds of experimental medication.
Finally I had a partial hysterectomy, removing 1 tube and 1 ovary. Then I got pregnant.
After my son was born I submitted to the hysterectomy and My goodness it healed me finally.
All of those years suffering and being made to feel mental. I finally got relief!
I understand your pain my friend.



posted on Jun, 20 2018 @ 07:36 PM
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Why (in severe cases) don’t doctors remove the ovaries causing a surgical early menopause so that the tissue stops reacting with fluctuating hormones?

Seems like it would cut to the chase with a more minimally invasive procedure.

Oh, and I can probably speak for many of us here at ATS, my hidden illnesses are mostly of the mind, and there is suffering, pain, missed work, and it affects our lifestyle much the same.

a reply to: mblahnikluver


edit on 20-6-2018 by gr8skott because: Forgot



posted on Jun, 20 2018 @ 09:17 PM
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No endometriosis, but chronic migraine.

"It's just a headache." Lots of people think that because they get headaches that are no big deal and go away after an aspirin that you're just being a big baby. They don't get how you can get head pain so severe it literally makes tears leak out of your eye (the one on the side with the attack) or can make you go blind, can make you just want to curl up in a dark corner and wish the world would go away and die.

For years, my own mother didn't understand or believe me until started getting them herself.



posted on Jun, 20 2018 @ 09:24 PM
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Yep, I know the Demon Vag routine quite well, it's been a thorn in my side ever since puberty struck. Might not be endo in my case, but I can rip through a box of ultra plus tampons in no time. I average about 2-3 hours per tampon. That's a heavy-ass flow, I know.
I'm not particularly sure what it would be if given a name, but I've got a rather brutal murder going on up there, every month, and it's pretty painful. Labor wasn't even a small fraction of the pain Flo is.

However, unlike many, I'm not particularly interested in medical intervention for it. Menopause isn't too far off down the road, and then it's done & over with forever. I think I'd rather let it run it's natural course than futz with my goods in the meantime with medications. I don't trust that to not backfire.
I will say that a massive uptick in water intake to compensate for what's lost out the hooha, and loading up on protein during that week of hell helps immensely, it's about the best cramps pain reduction I've ever found, better than prescription meds.
edit on 6/20/2018 by Nyiah because: clarification



posted on Jun, 20 2018 @ 09:29 PM
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originally posted by: ketsuko
No endometriosis, but chronic migraine.

"It's just a headache." Lots of people think that because they get headaches that are no big deal and go away after an aspirin that you're just being a big baby. They don't get how you can get head pain so severe it literally makes tears leak out of your eye (the one on the side with the attack) or can make you go blind, can make you just want to curl up in a dark corner and wish the world would go away and die.

Totally understand, I wanted to beat the snot out of people who used to tell me "It's just a bad headache, Nyiah, grow up." No it's not, asshat. Come here a minute so we can be on level ground a moment.


Mine used to be really, really bad, but I'm not getting them so much anymore the older I get. I've worked on having a more balanced diet, and I think that's helped the most. A lot of the stuff I used to eat when I was younger -- candy & junk foods in general -- I've cut way down to a handful of special occasion snacks a year, if at all. Whether or not that's coincidence or proof of triggers, I'm not sure, but I'm not mucking that up.




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