Treatments, pain and crying

[Chocolateymouse64]

Hi, it took me quite a few years to be diagnosed, I saw quite a few people and was just told that I was female and it was probably just period pain or I was constipated and my personal favourite that it was all in my head. I have always had heavy painful periods which run in the family. I reached the point where I was struggling to eat and couldn't walk. Eventually I was referred to someone who took me seriously and the scan also revealed a large mass. I was operated on and it had spread quite far and was diagnosed with severe endometriosis. I started to feel a bit better after the recovery but then gradually kept getting more and more pain and went back to how I was before the first surgery so was operated on again. I have also been given hormone treatments which were meant to stop me bleeding but none of them worked. After the second surgery I bled continuously and heavily for just over 3 months before I had a few days break and then started bleeding again. Has anyone else's body rejected the therapies? They also can't understand why I keep bleeding on treatments. Covid situation caused my consultant to be replaced and I now have another new one as I asked for a second opinion as who I was changed to told me to just live with it. I want to understand why I'm in pain and the whole point of treatment was to give my body a break to prevent it from building up again so quickly. I can have a good day and then out of nowhere excruciating pain followed by a lot of bad days. Just so tired and get upset at the drop of a hat and the strong pain. My other half, people I work with and friends don't understand, don't really believe I'm in pain. Some people know someone who has had it, they either had hrt or a surgery and are all doing fine now. So they think that I'm fine which leads to not telling people and I may have gone into myself alot more. I just don't know what to do anymore. Sorry for the long post

[Bespp]

Hi,sorry to hear you are going through this and it is not a joyful experience and on the other hand very traumatic. The doctors and the world want to see the pain in a form of a wound then they will believe you. Sadly, the wounds of endo are not only physically internal but in your mind and soul. I hear you as I have been and I am there. One recomandation i would like to give at this stage is to go and see a therapist not for the luxury but for the basic need of taking care of your mind and soul and to deal with the trauma and grief process that endo causes The grief of loosing your real beautiful self to this disease and the trauma of living through this with barely minimal support.

Hugs and love yourself!

Hope this helps a little

[Chocolateymouse64 in reply to Bespp]

Thank you for your reply it helped me to stay positive on my way to the hospital. How did you find your therapist?

[TennisAM]

Hey you're not alone. I've felt the same and have been told the same.

Not everyone benefits from treatments or surgery. Sometimes it's not done correctly and it can remain the same.

I'm totally on the same page as you. I realised that I'm experiencing grief, for what I've lost (my health, relationships, careers, my sanity etc etc). That takes time to work through but over the last year that's what I've been doing.

The Happiness Trap by Russ Harris is a fantastic book that I've been using. It summarises Acceptance and Commitment Therapy (a science backed therapy) that teaches people how to accept their situation in the moment and change what they can. I would really recommend reading it and applying it to your thoughts and actions. I used to wake in excruciating pain at 4am daily and couldn't get back to sleep. After observing my pain daily for 3 weeks, I had high pain again at night. I woke 5 times at night in pain, each time I thought "this doesn't matter" and went back to sleep within minutes. This progress is thanks to that book. I don't resist pain like i used to. It really has brought peace to my life when in pain. I need to use the same technique for all my other symptoms I think!

I noticed you're not sharing your experiences. That can he hugely draining. I used to do that and I started to feel burnout. It's important to lean on those around you that you trust. If you explain what's going on (pain etc) I would hope they'd be more sympathetic. If they're not then the question is are they worth being friends with, is this guy worth spending your life with. If he isn't supportive and considerate once you've explained yourself then I think he's not worth being with. This is a major part of your life and its a chronic problem. Unsupportive friends/partners just make this worse mentally.

I know its extremely tough, the symptoms and the mental health burden, but what I tend to do is make sure I notice when I am feeling OK, when symptoms are low or they don't happen. This tells me that it's not all bad, that there are ups and downs. I hope you have ups and downs to notice too.

The other thing that's helped me look for the good is using something called The Five Minute journal. As it says it only takes 5 mins to complete daily. It asks me for 3 things I'm grateful for in the morning. I generally concentrate on my strengths at the moment as I am very bad at self compassion. In the evening it asks for 3 things that have gone well. It really makes me think about what I'm grateful for and what's gone well that day. It rewires the brain. Its lifted my mood in tough times and I notice that I have less bad days emotionally. Even if I do feel emotional it doesn't last the whole say.

I've tried the following which also works:

- talk to friends (especially those that are funny/lighthearted)

- art - painting, clay is great, anything mindful

- watch my favourite comedian on YouTube

- moderate exercise

- write down how I'm feeling (journaling), sometimes it's eases once it's down on paper

- observe the mood but don't engage with it. This helps to show its just a feeling, neither good or bad.

- the vagus nerve is very important for mood. Singing, laughing, dancing, deep breathing, exercise and many other things stimulate the vagus nerve. There are even exercises that you can do such as massaging the nerve.

- eat something healthy that makes you happy

- turmeric is clinically proven to improve mood, there are studies that shows its as effective as some antidepressants.

Self compassion is extremely important, I feel like I've found my symptoms twin, as I was being as hard on myself as you are. I'm going to send you a great resource via private message (it's called the self compassion letter - it's very effective) you right down everything you feel about the situation as critically as you feel it. Then you write another letter as if a friend is responding. Maybe what you would say if a friend said that about them. It really highlights a different perspective and can be comforting.

Please remember that you're not alone, find something that's distracting and please don't engage with the thoughts that your having.

Have they prescribed anything to stop the bleeding? There is something, it begins with M, if you Google it there is something that you can take to stop the bleeding.

It's worth complaining to the clinical director at your hospital about the doctor that told you to put up with it. This is a reflection on them, not you. Always remember when a doctor tells you to put up with it, they are basically saying they're not good enough. They don't have the skill to help you. They are just too arrogant to admit it xx

[Chocolateymouse64 in reply to TennisAM]

Thank you for the suggestions. You've reminded me of things that I used to do and enjoy like drawing (although flowers are usually the only things that tend to look like what they are supposed to! 😅). I do tend to find it difficult to talk about things more recently but I do have a supportive family which I am thankful for. I do have some lovely supportive friends but due to their circumstances our interactions are not as frequent as we'd like and so I probably don't always talk about what I need to. When I have good days I like to try and do some yoga.In terms of stopping the bleeding they have tried all the tablets and injections they can, they have to be careful and can't give me some due to allergies and I suffer from migraines (they still put me on things which I shouldn't have been on and had to be taken off them as my body likes to have fun reactions to things, like convulsions, BP going ridiculously high and caused me to go comatose thankfully at the hospital rather than at home (I used to be quite low bp)). They also did a bone density scan due to the amount of injections I had and part of my spine is crumbling, vitamin D levels extremely low which can happen so on calcium and vit D supplements as well as iron (although try to use a herbal liquid formula rather than the tablets) due to years of anemia and high blood loss, but thankfully the years of supplements have helped.

I have tried a tens machine to help with the pain but for some reason it causes bad heads and sickness. I prefer herbal remedies rather than lots of medications. Unfortunately I think that I take after my mum whose body rejects everything.

I think I need more sun and warmth!

It feels good to talk to someone who understands and knowing that so many of us are out there so thank you for your suggestions and letting me speak.

Xx

[TennisAM in reply to Chocolateymouse64]

Sorry to hear all of that 😔. Ultimately I learnt during the first lockdown that if I can't change my symptoms then I need to change how I react to it. Good luck with it all and I'm sure your art is great. I tried to do flower art with palette knifes and acrylic. The guy on YouTube made it look so easy, mine looked like a 3 year old did it 🤣 (I'm still scarred!!) xx

[Chocolateymouse64 in reply to TennisAM]

Haha 🤣 oh dear! I'm sure that it was better than you think. Still sounds better than my attempt at knitting....was meant to be a scarf....I somehow ended up managing to add stitches and create a few button holes...... xx

[TennisAM in reply to Chocolateymouse64]

If you need a laugh.... This is the video I attempted to follow:

youtu.be/VUF9N0hATI0(Not working as expected?)

🤣🤣

[Chocolateymouse64 in reply to TennisAM]

It looks good 😀. I like the music in the video

[TennisAM in reply to Chocolateymouse64]

Think you're being too kind or in need of a trip to specsavers 😂😘

(The video is great, shame I don't have his talent)