Giving up, please help. : I am at the end... - Endometriosis UK

Endometriosis UK

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Giving up, please help.

Cjs93 profile image
10 Replies

I am at the end of my tether and don't think I can live like this anymore. 4 years in and in the worst state I have ever been in physically and mentally, I really don't know what else to do. I'm looking into credit cards and loans to pay for a private hysterectomy, endo is effecting my bladder, bowels, 1 kidney and my fallopian tubes. I don't know if a hysterectomy will help but I don't know what else to do. I am seeing a womans health physio who is so lovely and have been put on new medication to try by a endometriosis nurse but my GP is only dispensing 6 days worth at a time and even if I order immediately it takes around 2 weeks for the next lot to be ready, the nurse has said she will write to him to dispense 3 months at a time but it still isn't happening. I've lost my career, my relationship is plummeting and I feel I am at the end of the line. Has anyone had a hysterectomy and did it help? Does anyone know any specialists in the UK that I should look into? Sorry for the long message :(

10 Replies
Tropic profile image
Tropic

Hi lovely lady,

I am in Australia so not sure how I can help but I read your headline and just had to respond 💗💗 I have stage 3 endo and it took me 13 years to get a diagnosis. I had surgery last year. I had a miscarriage 6 weeks ago (it took my husband and I three years to fall pregnant) and since the miscarriage I have had the worst endo symptoms in about ten years and it has really affected my mental health lately. I say all of that to say, I get it, and I get the feelings of wanting to give up, but please don’t 💗💗 As I’ve read on many other women’s posts and responses on here (what a wonderful forum), it really is a process and trial and error. Over the 13 years I’ve found different things that have helped, so when I’ve felt very low over these past few weeks I’ve tried to encourage myself by thinking “I’ve had better days before, so I’ll have better days again.” I’ve found different pieces of the puzzle along the way, like a new doctor, a medication I hadn’t tried before, a new beautiful human who experiences the same thing and can give advice, a tip I try and it works…. So I say this to say that there are those in store for you too.

This absolutely is just the worst and absolutely sucks. And I’m so sorry it has stolen so much from you, it’s stolen a lot from me too, but I believe for you that there are better days ahead, as I believe for you too. I hope someone on here can recommend a doctor where you are, as over the years I have found what works for me is a good medical team: GP, endo surgeon specialist, naturopath, wholistic doctor, physio, chiro, gut health diet plan…. All these at different times have helped me, but they haven’t all come at once. It’s a process and a puzzle for sure. A sucky one at that.

Sorry for the long response but I hope some of that helps. Much love to you 💗

Cjs93 profile image
Cjs93 in reply to Tropic

Thank you for your message and I am so so sorry to hear of your loss :( I cannot begin to imagine what you have been through :( I hope you are doing ok and have lots of supportive people around you. I am so grateful for your knowledge and will definitely look into more types of management and hope to build things back up from there xx❤️

Tropic profile image
Tropic in reply to Cjs93

Thank you, it’s been really hard 😭 having a down day and re-reading my encouragement to you to apply to myself 🤣 tomorrow I’m having an iron infusion, vitamin D infusion and B12 shot. I know I’ll start to feel better after that because my levels are low. Have you had blood tests to check your levels? When I was at my most unwell about ten years ago (when I hadn’t been diagnosed with endo but was diagnosed with chronic fatigue and IBS), through a friend of a friend I found an integrative doctor who discovered my ferritin (iron stores) was at 6 when ideally it should be over 100. He said “how have you been managing?!” And I said it’s been really hard! Just walking around and breathing felt hard. Anyway, when he gave me the infusions I felt SO MUCH BETTER. I turned such a huge corner in my health, even though it would be another ten years before I would get my endo diagnosis.

Do you have any integrative doctors there that you know of? Or could find out? If you haven’t already had your levels checked it could really help! Hope you have a good day xxx

JulesUK profile image
JulesUK

hi, I’m so sorry to read your post. Know that you are not alone in your journey. It’s so frustrating that people are still being left to suffer in pain like this. I too was in a terrible way a few years ago. I’d lost my professional job, my relationship had broken down, I’d stopped socialising as I hate letting people down so had stopped making plans and was in a bad way physically and mentally. I am now in a good place. Believe it can get better. What have you already tried to manage your endo? I presume from the diagnosis you’ve had a laparoscopy. Have you tried things like zoladex and the Mirena coil? The most important lesson this has taught me is you have to push and make a fuss sometimes for the sake of your own health, as generally doctors aren’t great at diagnosing and a managing endo. x

Cjs93 profile image
Cjs93 in reply to JulesUK

Thanks for your reply, it's so lovely to hear that things have improved for you ❤️ it is so hard not to shut yourself off from the world. I have had two removal surgerys, the mirena coil which unfortunately had to be removed, codiene, Amitriptyline, Tens machines, hot water bottles & physio. I feel so awful to keep pestering health professionals as know they are so busy but I don't want this to be my future x

Mcyizml2 profile image
Mcyizml2

are you under a specialist nhs centre? I didn’t want to wait so found mine online and organised to see one of the gynae consultants privately. Might be worth doing that first (couple of hundred pounds) to see what the options are while you save?

Cjs93 profile image
Cjs93 in reply to Mcyizml2

That's a good idea, I will have a look to see where the closest specialist is based x

BloomingMarvellous profile image
BloomingMarvellous

Hi Lovely 😊

So sad to hear how difficult things are. Clearly you need the best care team possible but I get your saying that you don’ t want to keep “pestering “. So many of us get to that desperate place and stagger on managing increasingly hard to manage pain without proper relief. It’s emotionally and physically draining. While managing all the variables of hormones, meds, surgery, diet and specialist physio ( some useful, others not ) I was referred by my GP to “ Curable” App to see if it could help with the life destroying pain. While it can’t change the underlying physiological endo process it can help the pain management.

Cjs93 profile image
Cjs93 in reply to BloomingMarvellous

Thank you so much for your message, it really means a lot to see so many messages from people wanting to help 🥰 I will definitely have a look at the app

KatDragon profile image
KatDragon

Sorry to hear you feel so bad. I am being helped by the Chronic Pain service while I wait for surgery. They have prescribed me nerve blocking tablets I have taken a gradually increasing dose since May and it's helping though I still get flare ups and bad days. There is pregabalin and gabapentin. If you haven't had a referral to the chronic pain service, this may be worth doing. Best of luck,hope you soon feel better.

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