Pain right side close to the belly button - transverse colon ptosis

I would be tested for AIP (research info) on Google) by a hemotologist. I found out I had when my urine turned black. I also have nerve/muscle damage in my abdomen and pelvis. When the AIP hits I can't even talk the pain is so intense.
Do you have endometriosis that you are aware of? Another thing is cysts on your ovaries. I'm about 30 years older than you and I have experienced all these or I wouldn't say anything or think you should be tested for. With having the lap surgery any female issues should have been found. Might also want to try a good plain clinic.
Let me know if you find out more information. I totally understand being in so much pain, no one can really understand unless they have had acute/chronic pain.
Take care of yourself.
Carol

@wishingtobepain
Carol what does AIP stand for?
ZeeGee

Acute Intermittent Porphyria

@wishingtobepain
Dear Carol,
Thank you for your kind response and suggestions. I do have cysts on my ovaries that occasionally come and go, they were seen during the lap surgery but docs said they didn't think the cysts needed to be removed because they were small and would disappear after my period... they didn't find any endo. I will try to get tested for AIP (I live in Prague and it takes ages to get anything from doctors, same as everywhere I suppose), will share an update in here once the results are ready.
I am very sorry you have to deal with so much pain as well, and I truly hope that somehow it will eventually get better.
Sincerely, Erna

Dear Ema,
Cysts can come and go but can also rupture. I had cysts larger than a lemon on my ovaries and one would rupture every few months. That is horrible pain. I remember not being able to sit, lay down, stand up without horrific pain. I had a complete hysterectomy when I was 26 years old. I always wanted children, God had another plan for me.
AIP is not a common disease and many doctors in the USA have not heard of, so not sure how that will be in Prague. Most doctors are familiar with porphyria, just not Acute Intermittent Porphyria (AIP). In the USA there are Porphyria foundations, if there is same in Prague they may know doctors that are familiar with it. Just trying to give you as much information as I can to help you.
How does healthcare work in Prague? Is it socialized? I'm not too familiar with care anywhere except USA. Have a cousin that is a pastor who lived in Canada for a while. He did not like healthcare there at all.
You take care, and if you ever need to chat, I am here for you.
Carol

Dear Carol,
Thank you so so much for all the information! Got checked donce again by gyno -no cysts for now, but I'll keep an eye on this issue. I'm so so sorry to hear about the hysterectomy at such a young age and the outcome of it..To be honest I never really knew if I wanted kids till recently when I realised I might never have them because if the pain doesn't go away I don't know if I would risk increasing it while being pregnant and during labour..trying to prepare myself for all possible outcomes at this stage..:)
Czech Republic has a universal healthcare system based on a compulsory insurance model: we have to pay around 100$ monthly for the card which coveres all medical services, procedures and surgeries. I've heard that the healthcare system in the US is very expensive..to the point that some people had to deliver babies at home because they couldn't afford going to the hospital..
Carol, I am here for you too, should you ever need someone to talk to💙
Oh, and don't hesitate to reach out if you ever decide to visit Prague and need help or info.
Sincerely, Erna

Dear Ema,
You are such a sweet, kind lady. I wish we only had to pay $100 a month. My Medicare, which is thru government, costs $182.90 a month. The only reason I am on Medicare at 62 is because I am disabled and unable to work, and have been since I was 47. Normally Medicare is not available until 65 or 67, depending on what year you were born. They keep increasing the age because the government borrowed from the account. While working you pay so much per paycheck to your Medicare account, along with many taxes. The more money you make the more taxes are taken out. I never had to worry about that.
Medicare has a certain amount they pay per procedure, and only pay 80 percent with no limit. If you have major surgery or cancer you will be in trouble with medical bills. We have a secondary insurance thru the union that my husband worked thru prior to retirement. We pay about $1,400 a month for that. It's really expensive. In the USA if your in hospital it costs approximately $10,000 a night and that doesn't include doctors, medication and everything else. It's really ridiculous the amounts they charge and there is no regulations in medicine , so they can charge whatever they want.
Sorry I might have given you too much information, I find it interesting on how other countries operate.
I have traveled some when I was younger. I've been to Ireland, England, Italy, Denmark and Sweden in Europe. I loved to travel, not sure I could sit that long any more. My moms parents both came to US from Ireland, but she had never been. I took her for 2 weeks and we had so much fun. Met lots of moms relatives that we never met before. My mom is 85 now and isn't able to fly because she has blood clot problems and has almost died a few times from them. My dad passed away 14 years ago, I sure miss him.
Do you live close to your family? Are you married or single? It's very nice to visit with you and that's a lot of reasons for these chat rooms. I don't usually respond to anyone unless I think I can give them information to help them. I've had 14 surgeries and lots of health issues over the years. One nice thing about some of Mayo clinic chat rooms is realizing so many people are much worse off than I am, I feel very sorry for them and can't imagine having some of their illnesses.
Take care, chat soon.
Carol

Dear Carol,
Thank you for the detailed information on the US health system, - it's way more expensive than I've heard. To be honest, I really think that medical care has to be, if not free, the cheapest service in any country because it's the very basic of a human life. It's insane to think that people end up in a huge debt just by being sick and needing urgent surgery..
Sounds like you had a wonderful time during those trips to Europe 🙂 Very sorry that your dad isn't around anymore. . My father lives in Montenegro, so I don't see him very often unfrotunately, hopefully will be able to visit him this year..It's hard seeing your parents health declining each year and I wish we could live in the same country, but it doesn't seem possible at this stage. My mom and sister live in Prague, I live with my boyfriend, not yet married but we've been together for almost a decade..I honestly don't know what i'd do without them during this health crisis..)
This website is great, helps to put things into a perspective..great platform for people to exchange experiences and help each other..I think I've got more information from people here than from my doctors..:))
Sending hugs and best wishes to you Carol,
Sincerely,
Erna

Hi Erna,
I am so embarrassed that I have been saying Ema. I've had cataracts removed from both my eyes recently and don't have proper glasses until I go see eye doctor the end of June. I'm so sorry.
I don't know what I would do without my husband, he's been thru this very long journey with me. I told him years ago that he could leave and I would not be upset with him. Pain is very exhausting, and affects your entire life.
One of my best friends husband has had many back surgeries, knee replacements and shoulder surgery. Even though he has insurance they owed the hospital a few thousand dollars to hospital. My friend, Theresa was sending them money every month as most people would have to do. One day the hospital called her and wanted all the money then. They actually had the nerve to tell her to refinance her house and give them the rest of the money. She was furious, I forget exactly what she said to them but I know it wasn't nice. I don't blame her one bit for being so angry.
I'm sure it's the same in every country, but there is a lot of greed in the USA. Many people only care about money. As you and I and many others know if you have your health you are very lucky and blessed.
My husband decided to quit taking his meds and going to doctor. He is paying for it now as his blood sugars are extremely high, also his blood pressure. We are quite the pair...
I take my mom to her doctor appointments and take care of most of her medications for her. I do her weekly pills in a container by what time of day to take, etc. She gets a little confused if I don't. I have found pills that look fairly similar in wrong bottles. It's scary that she could make herself sick by not taking properly.
Family is a huge part of my life, mom and I are very close. She'll ask me to do things for her that she won't ask my other siblings.
I hope you get to see your father this year. Tell your boyfriend he is a good man for helping you thru all this health stuff.
Keep me updated on what you find out.
Take care,
Carol

I joined this chat because it was the only one that highlighted AIP, except for the diet with the same initials. My son was diagnosed with AIP (Acute intermittent porphyria) last October. He’s had seizures since he was 3, been on extremely high doses of anticonvulsant, and antidepressants (8000mgs per day) pretty much all his life and he’ll be 43 this September. He’s had 2 brain surgeries and a VNS (Vagal Nerve Stimulator) implant to help control the seizures when he was about 22. His seizures were fairly well controlled by medicine until he was about 21, at which time he had his first brain surgery. He had a second in 2004, neither of which did much to control his seizures. I was told by his neurologist at the time, that he was having sub-clinical seizures almost constantly. When he was about 23 he started having oral and visual hallucinations, and was diagnosed with schizophrenia. Later it became schizophrenia and BiPolar and eventually SchizoAffective DO, and was prescribed various antipsychotics (again at very high doses) to which none of these medications helped with the hallucinations. So, from 2003, until 2017, he was under the same group of drs, but his primary dr left the group in 2016, and he was changed to his partner. After about 3 visits and each time my trying to get them to DO something different because what they were doing wasn’t helping him I decided to change his Drs. This dr is the only one that ever actually tried to figure out WHY my son had these issues. He started testing him for Autoimmune DO and ordered a round of steroids, one a week for 12 weeks and they seem to help to begin with, but nothing significant. Last year he ordered a 24hr urine collection (of which he’s had many) but this time he tested him for Porphyria. A very rare autoimmune disorder. The test came back positive. At that time my sons dr sent him to a hematologist to confirm his diagnosis, and it was confirmed. The hematologist started him on treatments right away to see if there was any change, and to my surprise there was. So, as of February of this year he started monthly treatments of Panhematin five straight days out of every month, for the rest of his life. He is improving but it’s a slow process and it’s not a well know disorder and every time I read a new article about it, it’s very disheartening. Acute Intermittent Porphyria includes severe seizures, hallucinations and psoriasis. I haven’t found anyone who has this disorder to actually speak with to help me really understand how it affects the people who deal with it on a daily basis.
Does anyone out there have any real insight to this disorder?