I don't know how to cope

[CinnamonSwirl82]

I'm feeling a bit lost, depressed, angry, etc. I'm trying to put on a brave face but I feel like I just need to cry and crawl under a rock but at the same time I'm being unreasonable about it all.

I've suffered with pain & abnormal bleeding for 19 years. This last year has been the worst of my life and symptoms massively increased to the point I paid for private healthcare to get a Dr to take me seriously.

Result is: severe endometriosis & adenomyosis. It's destroyed my womb, its spread over my bladder, rectum, hips, pelvic wall, ligaments attached to my spine. Theres also extra pelvic endometriosis. It's right next to my ovaries and fallopian tubes so I don't think it'll be much longer until they're riddled too. The surgeon said it's so bad and deep in the muscles that they couldn't remove any of it. Speaking with them pre-surgery, I asked for a hysterectomy if things were bad or if they couldn't find anything because I have no quality of life and I've been unable to get pregnant. Well, that's no longer an option as its spread to other organs so it wouldn't have any improvement on my life.

All I can do going forward is try different medications to try and stop further growth and go on an endometriosis diet to help pain from inflammation.

I'm destroyed. I had my suspicions all these years but Dr's told me I'm crazy so I gaslit myself in to agreeing with them. Since finding it all out its floored me and I don't want to be alive anymore knowing that I'm going to have no quality of life going forward. There's nothing they can do.

I know I'm being ridiculous because the medication might work but the diet looks bleak and its just been the straw that broke the camels back.

I'll never have kids and I can't even get rid of my womb to make my life better. If I can't have kids, I at least wanted to enjoy what I did have! Nothing. Apparently that's nothing.

I can't stop crying and I feel so guilty because I'm technically no worse than I already was so I should just be getting on with life.

I wish I had some positive suggestions but I don’t. I just wanted to say I’m so sorry to hear you’re going through this OP. It sounds like you’ve been battling for so long to get some understanding of what’s going on and now you know you feel hopeless.

i don’t know your circumstances and forgive me if this it out of turn but is adoption off the table for you?

I'm so so sorry for you. I couldn't read this without telling you that. You've been appallingly let down by a system that continues to downplay women's issues.

Adoption definitely isn't an option. From what I've read it seems mentally exhausting, expensive and difficult to navigate. I take my hat off to those who go through the fight. I'd come to terms with not being able to have kids but that was on the grounds I could enjoy what I did have in life. Hearing that had the NHS have taken me seriously, I'd have been able to have them, has really mentally messed me up. I feel like it's opened a wound I thought had healed.

I just feel so selfish and guilty for crying and being in pain. I had all of this before my diagnosis so I shouldn't be any worse off and I feel ridiculous and like I'm over reacting. I don't know if finally being told I'm not crazy has opened the flood gates to all the pain I've suppressed over the years.

I'm so sorry OP, that's terrible. You have absolutely nothing to feel selfish or guilty for. You've definitely been let down by medical professionals here. I'm afraid I don't have any practical advice but I just wanted to let you know how sorry I am.

There are other women out there going through similar, so you may find some useful support groups online.

I wish you the best with your medication and with finding a way through this hand you've been dealt 💐

Thank you ❤️😔 I'm praying it works or I just don't know what I'm going to do. I've been to ill to work these last few months and I can't carry on like this

I have no advice or experience but that sounds awful op. How did the drs not diagnose it? Can you complain somewhere, I know it won't achieve much for you but might stop it happening to someone else.

I hope the medications work for you.

They just told me it was all in my head and the bleeding will be hormonal. They told me it so much I believed them. I thought the constant pain must be normal and what every woman goes through and that I was just a whimp 😔 it's what they told me anyway.

One doctor even told me I'm not infertile I just don't know how babies are made... he said I must think I need to orgasm to get pregnant. Its really been a shit show.

I complained to PALS and they forced Gynae to have appointments with me but the doctors still fobbed me off. They even lied to me about my last set of test results. I need to try and put a letter together for a formal complaint but I just don't have the mental capacity right now

I’m so, so sorry to read this OP. You have absolutely nothing to feel guilty about, you’ve had a terrible shock. Your knowledge of your symptoms and body was not taken seriously over many years. And now you find out that if your symptoms had been taken seriously, you would have been able to have kids. That’s a huge, huge loss. Of course you are not overreacting. I think any reaction, from grief to anger, would be completely understandable. Please believe that you have the right to be sad, or angry, or whatever you feel right now.

You appear to have been treated very badly indeed by the medical profession. I really feel for you. I wonder if there is any potential legal action that could be taken?

I really hope that in time, you will recover some strength and that the medication helps with your symptoms.

It's so heartbreaking to read that and I can dully see why you are at the end of your tether right now. I think you need professional help to come to terms with it all as there's no way you can keep this all inside. I can't reccommend where to turn but maybe some mental health helplines would be a good place to start. Please don't despair, I know it's awful now but your future isn't just lost. Sending you hugs xx

Thank you. I think counselling might be a good suggestion. I'll reach out to the one I've used previously and see if she's got any time for me.

Maybe a really good cry is what I need. I cried over Mcdonald fries earlier as DH came home without them and told me 'no'. I think that must class as hitting rock bottom surely?

Medical negligence may be a good shout too. I've lost so much financially over the years, paid for private fertility clinics, etc, so I'll reach out to a solicitor. Just need to try get over whatever the hell my life is at the moment and find some coping mechanisms.

I'm so sorry for your pain. I'm so sorry you weren't heard when you knew.

If enough of us challenge this, we could make a dent in being gaslit into believing we 'just' have IBS, or 'just' have heavy periods, or 'just' have lower back pain.

I'm so angry for you and I wish I could make it better.

Lots of love.

If you have all evidence of this...ask for your hospital and gp records (youll have to pay...its not a lot)..see if anything dismissive is on there, repeatedly..if so...take this to a solicitor xxxx

I am so sorry for you. I have heard that these are both diseases that can take a long time to be diagnosed and the frustration and pain you have gone through is more common than it should be.

I have heard many stories of women with endometriosis being fobbed off by doctors for many years. I believe there is an organisation called Endometriosis Uk.

Earlier this year I was going through a very difficult emotional time. I had to turn my face to face appointment with my therapist to a phone one.

I started off by saying, “I feel I’m spiralling (down), and don’t know how to cope” she started off by asking me what had been happening to me. After I told her she said “you are acting in a perfectly normal way, considering what has been happening to you recently”

Those are wise words, and I feel you are putting a lot of pressure on yourself not to be upset, frustrated and fucking angry over the way you’ve been treated for years by the medical profession.

In time you will be able to start processing all this new information, and make the changes that you need to make, to hopefully improve.

That time is not yet, you have every right to be mad as hell.

I did request my medical records the day after surgery and I've just had a text this morning to say they're ready to collect! I'm a bit stumped as I'm unable to drive currently from the surgery so I can't get them and I'm now so so curious!

Thank you. I've had a look and it looks as though they do a webchat to speak to someone. I might try and see if theres anything they recommend in terms of treating symptoms. I'm just so worried the rest of my life is going to be as I am now and it terrifies me

Endo is no joke. I don’t think you are being given very good advice. There are specialists out there that can help you. You just need a referral to the right one. It may be that going on hormonal medication - something to stop your periods could help. Have you tried anything?
You can also have surgery to remove the endo lesions, have a hysterectomy - which can reduce symptoms in some women.

Please keep going and Google specialists, you may need to travel to your nearest city to access specific care. Best wishes.

Personally I think that the doctors that failed you all these years should be.held to account - there are.too many women suffering like this and the medical industry gives no shits.- if they were held to account perhaps they would start actually bothering treating women instead of telling us we are hysterical idiots

I've visited a specialist and paid a hefty sum to do so, that's the only reason I've finally gotten a diagnosis.

They tried to remove it via surgery but said it was too deep and had properly fused to the organs so they couldn't remove anything. I'm on Prostap now to switch off my hormones in hope it does some improvements and I'll need to go on other medication once this wears off... but theres still an uncertainty over whether it'll work and it seems to be my only option.

I had a chat with a solicitor yesterday and they've taken on my case. I'm absolutely going to take it to the papers and I'll also raise it with my MP to take to parliament. It might not make a difference but it also might and at least it'll give me a direction to point my anger; helping out the other women that are suffering so they don't end up in the position I have.

@CinnamonSwirl82 Sorry you have been through so much.
Look into a drug called Decapeptyl. It induces a chemical menopause. Stops periods. Over time it makes the endo die back.

It's obviously not suitable for everyone but would be worth researching.

I have endometriosis.

Firstly, take the time you need to grieve this. I feel your pain, as the doctors fobbed me off for years and I was only able to afford a private operation to diagnose as my grandma paid for it.

When you are ready to take action,

Strongly recommend talking to endometriosis U.K.

Also - if you can stop periods that will help with the pain and or bleeding. I have had either the depo injection or the implant for a long time and it makes a big difference.

With respect to the pain, do you have good painkillers? I used mefenamic acid for a while but as I now have other issues as well I use naproxen sodium.

If you can afford to, get a second opinion on whether the endo can be lasered away. They might not get it all, but in my experience even getting some helps.

I'm sorry for what happened to you.

I received my medical records the other day and reading them has made me more angry. Throughout the years Dr's have been adding ?endometriosis to their reports but not following up on it. A hospital did do an MRI in 2019 and sent a letter to my GP saying there was absolutely no evidence of Endometriosis. I feel so betrayed by the health system.

I'm currently on the Prostap injection. I've got 6 months of this alongside HRT. Not currently feeling any different and I'm pretty sure I was having contractions earlier trying to pass a huge blood clot. Still bleeding, isn't lightening up at all and I'm still just as sad and angry and fed up. I've tried every contraceptive pill & the implant. Bled through every pill and I bled constantly on the implant.

I've got a follow up with my consultant at the beginning of Jan so I'm thinking of asking her for a more permanent solution. It might just be my anger talking but right now the thought of trying for a kid... I'm regretting my decision deeply.

Take these to a solicitor...should be pro bono for first half hour...or send to no win no fee solicitors to see if it warrants a case

Hi @CinnamonSwirl82 , not sure what procedure you had done, but I had an endometrial ablation due to heavy periods. Not had a period since and it's great.

I know it wouldn't help with absolutely everything, but maybe that's something you could have done to help with the bleeding issues?

I just wanted to say that the reason they weren’t able to operate won’t have been because your endometriosis is inoperable. It’s because they recognised that by having stage 4 endometriosis, legally the excision must be carried out in a BSGE centre with a named lead surgeon as specified on the BSGE website. In these instances their only option is to close you back up.

It doesn’t mean they can’t ever operate, just that whoever completed the first surgery isn’t allowed to excise such advanced endometriosis. 💐

So sorry to hear this OP. If you listen to podcasts, try The Therapy Crouch which is footballer Peter Crouch and his wife Abbey Clancy. She had a lot of problems but went private, and the episode where they discuss it is 28 March called 'The Doctor will see you Now'. Her private doctor came on and talked and offered free consultations for one listener every week. Some have come back since with really positive experiences - might be worth trying?

I know you have a lot else going on right now - good luck with it all. .