Anxiety, Challenging, Chronic health condition, Chronic Pain, Depression, Doctors, Exhausted, Gastroparesis, Menopause, misunderstood, Panic Attack, rare disease, Tired

Update: Menopause and physical health

So menopause is going well so far. I’ve noticed a few hot flushes and I did have some bleeding and some spotting but nothing too extreme. I’m on the hormone replacement patches now and off the pill. I got my second menopause shot today so we shall see if I get some more side effects and if I notice it more.

On the other hand, I was in the hospital for over a week two weeks ago under the care of the Gastroenterology team. I had been having lower right sided for a pain for 2 weeks and severe nausea for a week before that before it got to the point where I had to go to the hospital. My gastro specialist sent me straight to the emergency room and I was able to get a room on the gastro ward under the care of my gastroenterologist and his team. I got a CT scan which showed inflammation of the lymph nodes and thickening of my small bowel where that right sided pain was located. I hadn’t been eating or drinking (because I had such severe nausea) for 3 weeks before I went to hospital so I was put on fluids and also given some good pain relief. I found out I was allergic to morphine so that’s good. I also got an MRI which looked fine apparently. I sent off a feacal specimen to test for inflammation markers and if that come backs positive then I probably have crohn’s disease but because all my scopes I’ve had have come back normal, it’s most likely going to come back fine and rule out crohn’s disease once and for all.

The gastro team and my specialist think I might have some rare autoimmune, inflammatory disease called Mesenteric Panniculitis which is also known as Sclerosing Mesenteritis. The doctors told me that they don’t actually know much about this disease at all and that there isn’t really a way that you can diagnose it for sure so they’re going off my symptoms and also what the CT scan showed. They put me on high dose IV steroids for two days and then tapered me down to oral steroids which I am on for the next couple of months following a tapering schedule. The high dose steroids definitely helped the nausea and some of the pain. I am seeing my gastroenterologist in a weeks time to talk more about this possible diagnosis and a treatment plan. I also found out in hospital that I am severely constipated to the point of a possible bowel obstruction so I am on a very strong laxative regime every morning and night. The doctors told me that my bowels are pretty much completely paralysed right now and they don’t know when they’ll go back to working. Really hoping the paresis of my stomach hasn’t moved down to my bowels and is now causing bowel paralysis. I really really really don’t need that on top of everything.

I’m feeling scared, anxious, frustrated and sad but also trying to remain hopeful and remember that even if I do have this scary rare disease I might have some answers and find a treatment plan that works and I might be able to get some quality of life back. Right now I can barely walk without pain and I am basically on bed rest.

Understandably this possible diagnosis has had a negative affect on my mental health. My anxiety is very intense at the moment (not helped by the steroids) and my depression has also gotten worse. I’m making sure to be aware of my mental health though and talk to people and get some support.

Not sure what else to say.

Keep safe,
Maddy xoxo

Twitter: @ChronicMaddy
Instagram: @chronicmaddy

 

Featured image: http://www.booksinherhead.com/2017/12/life-update-winter-2017.html/

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Anxiety, Chronic health condition, Chronic Pain, Doctors, Exhausted, Menopause

19 and in menopause

My latest treatment plan to try and ease my abdominal pain is to put me into medically induced menopause for a couple of months to shut down my reproductive system and hormones to see if giving them a rest will reduce the pain. It is also a treatment option for endometriosis so if it does help with the pain then that will be a good indicator that endometriosis is causing all this pain. The menopause is triggered by a medication called Zoladex (Goserelin) which is given to you by an injection which releases a pellet the size of a grain of rice into your abdomen and you have to get the injection every four weeks. For the first two weeks I will continue to take my pill and then after that I will start hormone replacement therapy through a patch.

I thought I would document my journey through menopause because it’s not every day such a young person has to go through it.¬†

My gyanecologist told me that I won’t experience any side effects for the first two weeks and then after that I will start to experience symptoms that may include but is not limited to:
Hot flushes 
Sweating
Headaches
Dizziness
Mood changes
Vaginal dryness/itching 
Breast swelling and tenderness 
Bone pain
Nausea
Vomiting 
Diarrhea 
Constipation
Loss of appetite 
Sleep problems such as insomnia
Acne
Mild skin rash and itching
https://www.rxlist.com/zoladex-36-side-effects-drug-center.htm

Some of those symptoms are side effects of the injection but a lot of them are the same symptoms a lady in her 40s-50s would get if they were to go through menopause naturally.

The injection itself really really hurt for me, it was not fun at all. The injection site and around it has become a little bruised and is a little tender to the touch but going ok. The needle isn’t massive but is bigger than a needle you would use to get a blood test done.

I’m feeling pretty down at the moment. I guess I never thought that I would have to experience menopause so early in life and have to go through all those side effects. I’m trying to remember that it might take away my pain and I will get some quality of life back and to not think that my body might reject it and I’ll have a really crappy time with it. If it relieves some of the pain so I can function during the day then I will be happy.

I’ll let you know if and when I experience the side effects and how I go with the hormone replacement therapy.

Keep safe,
Maddy xoxo

Twitter: @ChronicMaddy 

 

Featured Image: https://www.pinterest.com.au/wiser1s/menopause/

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Challenging, Chronic Pain, Depression, Doctors, Exhausted, misunderstood, Tired

They just don’t get it!

Doctors. You love them and you hate them but most of the time they just don’t understand. They don’t understand how hard it must be to be in chronic pain and to deal with that every day, they don’t understand that when you’ve been in so much pain and so sick for so long ¬†any diagnosis is a good diagnosis. They don’t understand that when you’re in pain every single day and you don’t know why, getting a diagnosis can be life changing in a good way. So when they tell you that your test results are negative with a big smile on their face you nod and say that’s great but on the inside you’re crying and screaming just wishing that they were positive and that you had some answers because when you have answers, you can start a treatment plan and find what works and what doesn’t. When you go to a new doctor and you have to tell them your medical history and you tell them how much pain you’re in they just don’t understand what that means, they ummm and ahhh and write things down.

I had my gynaecology appointment yesterday and she was good as far as specialists go but I still felt like I wasn’t being heard. She told me that I have chronic pain and that she thinks all my pain in my abdomen is from my nerves. She thinks that she isn’t going to find any endometriosis when I can get in and get a laparoscopy which will be in 6 months to a year because the public waiting list is so long. Privately it will cost around $5,000 and because my body is complex I would have to stay in hospital a night to two after the procedure so there’s another one to two thousand. She’s put me on Lyrica which I REALLY don’t want to be on because I know how nasty it is, but I don’t really have a choice. I have to try that for 6 weeks (if I don’t get any horrible side effects and have to stop it sooner) and if that doesn’t work go back to her and talk about medically induced menopause. She’s going to put me on the wait list for surgery in the mean time. So for now I’m still stuck with pain and I probably won’t get any more answers for a year which doesn’t make me feel any better. I didn’t expect to go in there and come back with a cure, but I did expect her to take my level of pain more seriously and do more than put me on a medication which I told her I’m not very fond of and really don’t want to go on. Since I’m now taking Lyrica I can’t take the steroids my gastroenterologist wants me to go on because then I won’t know which is helping if I do start to feel better and be in less pain.

I just want some answers.

Keep safe,
Maddy xoxo

Twitter: @ChronicMaddy 

 

Featured image: https://www.moceanic.com/2018/when-donors-complain/pop-art-frustrated-woman-123rf-2/

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