Shame and isolation with chronic pain.

[Lejay]

I am still in the process of getting a diagnosis after being stalled for 2 years by doctors who wouldn't listen to me or suggesting it something else. I finally have my first gyno appointment on tuesday so I can move on with a (hopefully correct) diagnosis of my chronic pelvic pain and symptoms that are very similar to endo. I had a major pelvic pain etc flare up since I came off the pill 9 wks ago. Does this happen with endo?

I am currently dealing with some level of pain on a daily basis. My hips and lower back pain with waves of stabbing in the pelvic area is driving me nuts at the moment. I can barely stand and walk. It feels like my lower back is going to crumble any minute. I tried my usual painkillers and heat pack but the pain is increasing everyday...or maybe I'm just getting more exhausted and weaker the longer I am dealing with it. I don't know. I'm also suffering from a chronic sore throat not long after this bad flare up started and I can't get rid of it. I haven't got other cold symptoms so I have no idea why my throat is killing me either.

Chronic pain is debilitating and yes it can be lonely and isolating even with a support system around me. I've almost become housebound because I can barely walk. I'm literally so exhausted I find myself barely able to keep my eyes open during the day. At the end of the day and at night my front pelvic area, hips and lower back pains get worse I don't know why. I have my wheat heat pack on me nearly all the time because it's the only thing that gives some relief. But now my mum (who is a nurse) has started to shame me about taking the heat pack with me to appointments because the pain is that bad. She has started to come with me to appointments for support and she rolls her eyes at me and almost seems embarrassed that I have to have the stupid heat pack clutched to me while I wiggle and breathe through the pain.

[Pinkyandthebrain]

You poor thing, this sounds really dreadful and I’m sorry your mum is struggling to give you the right kind of support.

I don’t really have any advice but the title of your post perfectly describes how I feel so I just wanted to reach out and say; you’re not alone.

I know that doesn’t help, but keep your chin up and I hope you get some answers soon. X

[Lejay in reply to Pinkyandthebrain]

Thank you for the kind words of support xx

[missymo]

oh God bless you. the burning pain is horrendous in my pelvis! camera in the bowel& "front bit" soon.im dreading it 😢

[Lejay in reply to missymo]

☹ hope you get an answer soon! I'm dreading what diagnostic procedures are to come but at the same time I am excited that I am finally moving towards a diagnosis. I just hope they find something because I don't know what I would do if I have to go back to the beginning of following up another cause.

xx

[Ginge32]

Good luck with your appointment on Tuesday, I hope they get you on the right path.

I honestly don’t know where I’d be without a heat pack down my knickers and my hot water bottle strapped to me!! it’s a shame your mums not a little more understanding of the relief this is giving you but i feel like unless you actually feel the pain of these symptoms you’re never going to understand it fully.

I’ve had a bad day too and nothing anyone can say is right, and I’ve had a meltdown - you are not alone! C

[Lejay in reply to Ginge32]

Thank you, I hope so too!

Heat packs are the best invention ever hey! I used to just only need them for period pains before my chronic pelvic pain and symptoms started but now I need it on me every day constantly. I've even been googling other forms of portable heat because the wheat heat pack heat only last about an hour or so and aren't exactly a subtle everyday accessory haha.

I understand why my mum is like that because people who've never experienced pain like this don't truly understand. I feel that once I get a proper diagnosis, she might change her attitude a bit. So I am really hoping they find a diagnosis because I don't know what I would do if they don't find anything and I have to see more doctors and specialists and go back to the beginning of the diagnosis process. I am exhausted enough already and this pain is seriously interfering with life.

Hope your day got a bit better! The meltdowns are the worst. I hate that I am moody and burst out crying in front of my boyfriend. I don't like being in pain in front of him and I am not myself. He is really caring and supportive but my natural reaction is to tell people I am ok, when I am clearly not, and then I want to be left alone. *sigh*

[Peebles2sarah]

I had to ask my mom to stop being involved with my healthcare because she was almost as unsupportive as the doctors. Now that I’ve been diagnosed and had multiple surgeries, she’s certainly changed her tune. Do not let it get to you, only you know your body and your pain is valid. In terms of the birth control, going off it would certainly increase your pain. Endo is a hormone based condition and since birth control regulates your hormones (less fluctuation), it is a primary treatment for endo. Best of luck xx any other questions please do not hesitate to ask.

[Lejay in reply to Peebles2sarah]

I originally went to appointments by myself but the worse I got and the more unsupportive GPs I visited, I had to get my mum to come with me because I am so exhausted that I have been struggling to think straight and talk about my symptoms for the hundredth time especially when I'm sitting there in pain.

Well I hope my mum will a bit more sympathetic and understanding once I get a correct diagnosis, which I hope I will!

I suspected the increase in pain and symptoms was related to going off the pill. But this all started when I was on the pill, which was confusing. But i was having a lot of issues with the pill before it all started, like constant hot flushes, frequent migraines, breakthrough bleeding and very emotional and crying when I am not usually a crier. I am now back on the pill to hopefully help with the period pain (I'm dreading my first period back on the pill) and to help my skin! I went off the pill originally because of migraines and tried implanon instead but that gave me horrible side effects and that was when my pelvic pain and symptoms flared up bad again. Do you know if oestrogen based contraceptives are better than progesterone based ones for endo?

[Peebles2sarah in reply to Lejay]

You want a low dose estrogen birth control, one like Yaz is great. Once birth control was no longer effective for me, I went on Visanne which is only progestin (no estrogen at all). Endometriosis is basically estrogen dependent so the more you can limit it the better. I eventually went on lupron injections which completely blocked my ovarian hormones (alot of side effects though).

[3caramel7]

Any joy when sitting in the bath?

[Lejay in reply to 3caramel7]

My bath is broken so I haven't had a chance to try a hot bath.

[anna965]

I'm so sorry you are struggling with this, especially with your mum at times being unable to give you the support you need. You need to do what ever makes you feel comfortable, but it might we worth really sitting her down and explaining how you feel, every last bit of it. Though I'm sure she is aware of most of it with regards to the pain; the main thing here I think is to tell her how SHE makes you feel, aside from the physical pain, because you certainly don't need that from the person who is meant to be your biggest supporter, at a time when you are truly vulnerable. It's just not helpful or productive.

She might not be aware of how it's affecting you, and we're all human at the end of the day, and I'm sure it is not intended to shame you. Sometimes we don't realise how we are affecting someone until it's pointed out.

Otherwise, is there anyone else that could possibly come with you to the appointments? If there is, I would suggest asking your mum to tone it down (as in 100%), or you will be going with someone else.

That's just what I would do personally but as I said, it's all about what makes you feel safe and comfortable.

I just know what it's like to feel vulnerable, scared, in pain etc., and at the same time having to deal with disbelief and scepticism from your surroundings.

No one besides endo sufferers fully understands what it's like, and we should never be in a position of feeling judged, shamed or questioned.