A Lot Has Been Going On, Yet It Seems Like Nothing Has Happened

[ajw4790]

Hi again to all!

It has been a while, yet again. I just have such a hard time spending much time on the board anymore. Things move so quickly, there are so many questions, and so much scientific discussion that my brain seems to just shut down. I want to participate more, but when I try I sound so incredibly stupid when I try to make my mess of thoughts make any sense in words. I am so over that issue/feeling! I want to be able to actually communicate!

More and more things have continued to occur over the past few months, that I seem to be in this endless cycle of trying to get somewhere with my health care and being my own advocate. Then like clockwork someone wears me down and I just try to avoid everything health related for a while. I am sick of this cycle. I also am tired of days that are just trying to get sleep, drinking plenty of water, taking my medicine, eating enough salt, and trying to choke down some food. Too many days of water, salt, meds, food, sleep, and that is it.

Past few days I couldn't even bring myself to be online much. I tend to spend a lot of time online, but I prefer mindless activities that I don't have to see other peoples lives or "talk" with others. I am just too overwhelmed to deal with any of these things. Anyone else ever feel like this???

So... why do I feel like this? The medical staff that seems to always make things 10x more difficult than it needs to be is part of it. Another is facing yet another calendar full of appointments. I have had a bit of a break which was nice, but I am not really wanting to go on my very own "summer medical tour". I also have had another round of hit and misses with medications, which is always rough. Propranolol for the 2nd try was a big no-no, and most recently tried a bladder spasm medication that caused dilated pupils, headache, palpitations, and seriously increased my restless leg symtoms. But, get this it actually HELPED for once! But, of course I could not tolerate it! Boo!

I am waiting on a 2nd sleep study since I moved they want to redo it here, and then maybe finally getting to treating the sleep apnea. I also have to see a hematologist to get the iron infusions to bring up my iron and ferretin levels. So, both of those are multiple appointments. Then appointments with my PCP, and then gastro. and derm. eventually. And then the newest and also likely cause many appointments with the gynecologist. It is all just too much again after Feb. at Mayo for 8 days of testing.

I am normally a big "near fainter", but I hardly ever actually faint. But, I did recently faint for the first time in a long time. So, that is kinda hard too...

The bladder pains and spasms have gotten worse. Then with my last period the cramps and pain were a whole lot worse. That is what caused me to faint. Long story short, they think it may be endometriosis. Just what I need another diagnosis, another dr., more tests, etc... Not to mention the pain and embarassment/sensitivity of the subject matter... If it is endometriosis, it would likely make a lot of sense and explain quite a bit, so I suppose it is not all bad. It could explain not only "time of the month" issues, but the bladder pain/spasms, back pain, IBS symptoms etc. Makes me wonder if it didn't all start with my appendectomy in high school. That is when a lot of things got worse...

Thing is there is no great way to diagnose. Probably means a laparotomy... Then, treatment is not that great either. Messing around with all the hormones and potentially causing more harm than good. I do not want to go that route at all. I am ready to tell them if it is endometriosis that they can just give me a hysterectomy. At 26 that is kinda hard to say, but I do not want the pain etc. of endometrosis or the side effects of hormones. This is probably why my iron is so low, and has probably caused issues with absorbing all other kinds of vitamins and minerals. Possibly could even have caused the neuropathy. The hormonal dysfunction could also have contributed to my heat intolerance, weight gain, and hypoglycemia issues. It is just a rollercoaster...

It doesn't make it easier that each doctor says this is another's domain. It was almost impossible to find a female gyno. here as well. That was awful! And I still have to see a nurse practitioner to finally maybe see an actual dr. It is never ending!!!! And they are making me wait forever, and it will be right before my next cycle, so I will likely have another one as bad as the other before any progress is made.

Why does it have to be so difficult? Anyone who can relate? Anyone have the iron infusions? Endometriosis? Or anything simialar? I am looking for any and all info and advice etc. I don't know what to think anymore...

And to make it worse the financial situation is worsening and I am being pushed to find income, but I have found nothing that I could do on a regular basis and not get fired for being unreliable etc... Urrgghh!

Sorry about the length!

Any thoughts, ideas, info. on these issues/treatments? Especially endometriosis- I am new to it and not incredibly knowledgeable.

Thanks!!!

[lieze]

I don't want you to get a bunch of readers but no responders so even though I can't relate to your particular issue I understand how frustrating all of this is.

In the beginning I didn't think I'd live another 3 months to wait to get into a certain doctor and thought how in the world will I make it that long this way? And just making an appt for my little guy to the dentist-he is the only one that has this problem but he got the cavities on the middle of the two front teeth from juice. Well I want to get that fixed it takes forever to get in and then it's just a meet and greet-Hello!!! already just fix the teeth will ya?

I understand also about the intensity of the health groups. I can usually only hang for a couple weeks to a few months and then I need a break emotionally psychologically.

I hope others can give you more advice regarding your particular issue.

My guess would be prioritize which is most important and hit it first and move on to the next.

I know how exhausting those appt are and how it saps your energy. I had to lay my head back and close my eyes and be okay with dying on the way home from my doctor's appt yesterday and picking up daughter from bird camp. We just get those lows and the stress and physical drain of these things takes us there.

Hang in there!

[sandra claus]

Hey there,

I haven't had endometriosis but suffered through super heavy periods, cramps bad enough they put me in a state of shock basically and low ferritin levels. I got an endometrial ablation in March as an alternative to a hysterectomy. I'm already sans gallbladder and thyroid gland so I thought I might want to keep this organ :-). I have no idea if it is of any help for endometriosis but my Ferritin levels came up from 4 to 41 in 3 months and I was only getting in two iron pills per day vs. the three they wanted me to take. I now have a "panty liner period" and no cramps. Have they told you not to take iron within 4 hours of calcium (or thyroid replacement) as they bind up together? No one ever told me that as I struggled with my ferritin levels and they wouldn't come up. I take calcium in the eves to keep the restless legs under control so I could sleep and was taking all my iron at the same time so I wouldn't have to deal with the upset stomach. Also iron is best absorbed when taken with some vitamin C. I didn't go the iron infusions route, it was offered to me but Doc said I could go either way, as I have heard that there can be allergic reactions to it and I have allergies and sensitivities. If anyone was going to react I figured it would be me!

Doctors visits are exhausting and frustrating, I agree. I had a rule of no more than two appointments per week for myself and tried to prioritize. I have done phone appointments with my PCP on a couple occasions, too.

Hang in there!

Sandra

[sugartwin]

I can relate. I have endometriosis too, but the diagnostic laparascopy (much less invasive than a laparatomy) and the subsequent continuous birth control I went on really weren't a huge deal.

There were some complications during the surgery related to my POTS. I had to get multiple shots of ephedrine to keep my blood pressure from crashing and I lost oxygen saturation at one point. And the BC caused a flare up in my EDS symptoms by making my joints more painful than they already were.

I have to say your symptoms sound like endometriosis to me too. I had a huge problem with bladder pain and constipation before I got the implants removed.

I also have low ferritin and have been trying to get an iron infusion for quite a while. The first hematologist I saw had bizarre hours and then when I finally got in to see him, he wanted money up front. Now I'm looking for a different hematologist. I'm really eager to have it, because I can't take iron pills due to stomach issues and I think my low ferritin might be why I have such low energy levels.

I know how it is to have doctor fatigue too. Good luck!

[issie]

Yes, hun, you're not alone. Been there, had 8 abdominal surgeries for endometrosis. I'm on the run tonight, but if you type in endometrois into the search engine, you can see most of my replies in regard to it. I'll write more later. Let me know if you read them, so I won't repeat myself.

[dianne.fraser]

Your life sounds totally overwhelming right now - I'm so sorry.

I have night-time respiratory symptoms during exacerbations of my illness. During my first big exacerbation, I would wake at night, gasping for breath. It felt as though my body was forgetting to breathe, and I was certain that I would suffocate. Other times, I've woken feeling as though the muscles at the back of my throat have collapsed, blocking my airway. During my only sleep study, I had a couple of harmless hypopnoeas - nothing to worry about. I guess that, when our symptoms vary from week to week and sometimes disappear altogether, it can be hard to capture what is happening during the worst times. When I'm managing my illness well, and there is nothing aggravating it, my respiratory symptoms sleep.

I developed bladder symptoms during my last exacerbation, including periodic incontinence and and urinary urgency. I didn't expect my bladder symptoms to resolve, but they did. It took about a year after my last exacerbation.

My respiratory and bladder symptoms are the symptoms most likely to leave me completely hysterical.... No heroics here.

I don't seem to tolerate medications - I've tried propranolol (among other medicines) and it seemed to amplify my symptoms. I feel relieved to hear of your experience - I think my doctors feel I'm just being difficult.

I have a long history of anaemia. It was during investigations for anaemia many years ago that I had a laparoscopy and I was found to have a number of small patches of endometriosis - these were fried out during the procedure. I wasn't told of any problems encountered during the prodedure, but I struggled to wake up afterwards. All the other patients in the day surgery unit had gone home, and the nurse was still shaking me and saying 'Dianne, you have to TRY to wake up'. I hope that you will arrange for someone to pick you up after the procedure and take care of you when you get home.

I'm sure you've read of the other stories of anaemia on the Forum. I become anaemic if anything at all aggravates my illness - usually overwork, lack of rest, infection, physical activity or medication that doesn't agree with me. My anaemia isn't related to blood loss or malabsorption, and it doesn't respond to increased iron intake unless I first rest and get my illness under control. I was once given 11 weekly iron injections - my doctor thought that my anaemia would resolve if he just kept adding more iron. This made me very, very sick and I've never regained the functioning I lost during that time. Because of this experience with Ferrum H, I have refused further iron injections and infusions when they've been offered.

I'm currently anaemic - my approach to it is to take leave from work, go onto bedrest for a least two weeks and do all of the things I need to do to contain my illness (rest, stay warm - it's mid-winter here in Australia - keep my fluids up and my salt intake, lay flat as much as possible, eat a nourishing diet). I take a liquid iron supplement as one part of this overall approach. I guess that because my anaemia is directly related to the state of my illness, rather than blood loss or malabsorption or insufficient intake, this approach has never failed to work for me.

I'm on day two of a month-long rest - I'll ask my doctor to check my iron levels before going back to work on 2 August.

Your doctors will have proposed an iron infusion because they believe your anaemia is due to blood loss or low intake - otherwise, they wouldn't expect the infusion to have any impact. They will understand that, with anaemia, you have to identify and treat the cause.

Let us know how you go with it.

Hang in there.

With best wishes

Dianne

[ajw4790]

Thanks everyone!

By just putting this out there and being able to "talk" with others helped a lot! I was having trouble getting to and staying asleep some before this, but after my post I crashed! And it was a relatively restful sleep too, it was nice!

Thank you to everyone who took the time to read my post and to post back as well! I am still trying to wake up and get my brain working, so I think I will have to reply to everyone more later.

I realize now I got my medical terminology mixed up- I did mean laparoscopy and not laparotomy. Whoops!

For the iron supplementation- I started down the route of infusions because I can't tolerate the iron pills, even one a day or every other day. I went up a bit from 3 to 13 over a year, but am going back down again to 9. So, I need to do something. It is one of those stuck between a rock and a hard place deals. As far as why it is low, there has not been much speculation or knowledge there... Not due to bleeding though. More likely not being absorbed correctly due to intestinal issues. So, not sure if infusion is best way to go? But, not sure what else to try. A lot of the foods that are super high in iron are hard to digest or high in sugar, so diet does not seem to be all that good of a choice either... I guess I consume quite a bit of calcium, which is probably not great for things, but there are so many things I can not eat. I was told to try OJ with the iron pill, but I have not been able to drink that stuff since I was very young- way to much acid! Not sure if Vitamin C pill would work?

More later... I am still physically exhausted even after some decent (for me) sleep.

Thanks again to everyone!!!