At a dead end with NHS. Was wondering what I should do next?

[Misfit]

I've just been diagnosed with stage 1 endo after a laproscopy. I also have IBS and a scarred kidney which is partially functional. This all contributes to my daily pain and sickness. The problem I have is that the Urologists blame the Gynaecologists and the Gynaecologists have said they will not treat me until it gets worse. I also have Borderline Personality Disorder and both Uro's and Gyny say I need to undergo psychotherapy. In lament speak 'it's all in my head'. I'm sat on a waiting list for psychotherapy (even though I've been in and out of counselling since the age of 11) which could be years. So right now I'm left in limbo. I'm 25 years old and I've had this pain for 10 years. It's gradually getting worse to the point where I'm immobile. I'm on a lot of pain relief including morphine and gabapentin. I feel like my life is over. I really want to get back into work but I had to give up working and university because I'm unwell. I'm sick of being on ESA with the relentless hounding and 'assessments'. Stress makes my pain worse (high blood pressure affects my scarred kidney) and I really just can't go on living like this. I used to be so active and I want some form of life back. Any suggestions as to where I can go NHS wise? I have a very understanding GP but he doesn't know me very well as my last GP left the surgery. Is there anything specific I should be asking? The treatment for my endo currently stands at taking the combined pill for 3 months then off for a week then back on it for 3 months etc. Currently in my 4th/5th month and feel worse for it. I'd really appreciate some advice. No-one I know has endo and I really have no one to talk to about it.

Thank you for taking the time to read this!! xXx

[salsaem]

Hi Misfit,

I probably cant help much but just wanted you to know I was here I guess. I suppose i would want to know how your gynae can say they cant help til it gets worse. If you are in daily pain then surely that would be enough? Whats happening with your scarred kidney meantime? It should not be up to them if you need pschotherapy and they should not be giving an opinion on this. That makes me very angry. I would be back at my doctor and telling them you want something done. You are the patient and need the professional to do their job and refer you back to the urologist and gynae. Otherwise I would be contacting my local counsellor and asking for their help. Go to CAB for the relentless ESA assessments. There are other treatments available. The combined pill is not the only answer. They may be thinking you need to give it a chance to work but I would guess 6 mths should be sufficient for this. Your GP needs to know how badly this is affecting your life. They wouldnt want to live with it so why should you. Take a friend or family member with you to the GP to support you.

Take care and good luck.

x

[Misfit]

Thank you for your reply! As you can imagine I've been tearing my hair out over this for a long time. They really haven't given me any options other than psychotherapy and taking a lot of drugs. But with that comes side affects which I have to take more tablets to counteract. I'm just sick of feeling like I have no where to turn. I really don't want to get referred back to the Urologists as they made me feel so small. When I went in for my laproscopy I saw one of them and proceeded to have a panic attack because of how awful they made me feel and now I'm crying because it's brought it back up. I feel so stupid!! My GP does know how bad it's affecting my life. I use a walking stick and my boyfriend has to help me in and out of the chair in my GP office. I'm always unclean as I can't wash daily because it takes so much out of me. I just feel like a useless disgusting mess. Suicide is always on my mind as I feel like I'm holding my boyfriend back (he's me carer) and a massive drain on my friends. Don't worry I've been down that route and won't do it again but it never stops being an option in my head. Is there any way I can get referred to a specialist in Urology/gyny?

Thank you again. You don't know how much it means to me <3

xXx

[salsaem]

Hi,

When you say "they really havent given me any options" who do you mean? The only person who should be giving you advice like that is someone in the mental health field. Have you had a CPN before? Due to you having both physical and mental health difficulties I would check your local area for advocacy workers as you should not be facing this yourself. Most areas have this. If you cannot find one, check with CAB and/or your local social work office. Advocacy workers are free and usually only offer the service for people who have physical and/or mental health difficulties. They advocate on your behalf, which is what you need. Next, I cant believe someone has made you feel so small. Im not sure if you can ask this but i would check back with your GP about another referral to a different urologist. Explain the difficulties you had with the previous one. Do you need more investigations into you scarred kidney? or are you hoping for some kind of surgery to repair the kidney? Remember you have the option to complain about your treatment at the hospital! They will have a complaints procedure. Any difficulties with this could maybe be dealt with at CAB. I really think you need someone supporting you through this. As for requesting a specialist, I asked this site to send me a pack on endo, for my employer, and in it was a list of specialists and endo clinics in Britain so it might be a good idea for you to look at it and take it to your GP. You have the right to ask for a different gyno. I am on my fourth at the moment. You need to go back to your GP to request this. You need to find one you trust and who is interested. I do not see how a gyno would have the right to refuse you different treatment if the combined pill is not working. Do you have any family members who could also help with your care? Im so sorry you are feeling like that. I do think it is worth maybe talking to a professional about how you are feeling. I have just finished with counselling and it took me years to find a good counsellor. Remember there are support groups out there. Your boyfriend sounds like a good guy and he wouldnt be with you if he didnt care so you need to trust that he wouldnt have it any other way. Your friends too.

x

[Misfit]

Thank you for the support. I really appreciate it!! I have no idea what a CPN is? I did have an occupational therapist but she's stopped checking in on me :/. I currently see someone from the mental health team and I'm on a waiting list for psychotherapy. I've told my GP that I don't feel any better since taking my pill for 3months. I told him I felt worse as I was very bloated and felt really heavy. I contacted pals when I was having issues with my first urologist and they sent me to a different one who is part of the same team so that didn't really make anything better as he still has the same view as my first urologist.

This problem with my kidney started getting worse when I was at uni in Leeds and the treatment they suggested was removing the kidney all together. So I got referred back to my hospital in Middlesbrough to have the operation as this is where my family are. The first urologist I saw said he would take the kidney out to my face when I was in hospital but as soon as I got home I was sent a letter stating they wanted to do more tests (even though I'd had every scan under the sun in Leeds). After more tests he concluded to fix the reflux but not remove the damaged kidney or even just the damaged part. I had that done then I went and saw a different urologist through PALS who didn't do anything. I asked my GP at the time to see a specialist. The renal specialist I saw said I will need my kidney out at some point but right now they don't want to upset the balance as there's every chance my other kidney could go, which there was no evidence of. In fact my right kidney is working at a bigger capacity as it's been compensating for my left for so long. She was the one who sent me to the gynaecologist....

....and here I am! Had my laproscopy and been diagnosed with stage 1 endo and IBS as well.

I will definitely have a look at the endo pack on here. Thank you for that!! It's all just a waiting game and I really just want my life back!!

xXx

[synnova96]

Hi,

Just wanted to say sorry you have had such a rough time. You are definitedly entitled to a second opinion and with someone with a special interest in Endo. Also is there a local Endo support group near you I wonder? Also there may be private counsellors in your area that would offer low cost counselling. See itsgoodtotalk.org.uk/ or other organisations like Mind. I find it frustrating that the NHS is not at all holistic - bodies are not looked at as a whole but as separate sections- ths is not helpful! Is there any chance there is endo in your kidney? Also endo causes IBS type symptoms ( i have it in the pouch of douglas area between rectum and vagina and had bowel symptoms).

You are a person not a label. Don't let them dismiss you because of this. Who gave you the diagnosis of BPD? Did they give you on going support at the time?

The Samaritans can be good to speak to when you feel bad but it's also good to be with people who know what it's like to have endo.

It sounds like you have some people in your life who care about you which is good.

xxx

[Helen40]

Hi Misfit so sorry you feel your life is being taken over by your illness , hope the replies help you , you must go back to your doctor and hospital , ask for second opinions , also get a review of your medication they could be contributing to your health problems , gabapentin can have dire side effects ,maybe they could try other things , go to your local patient liaison service ,mand do you have access to a pain clinic , details at your local doctors and hospital ,tell them you are not satisfied with your diagnosis and treatment , they should be able to help you as well , don't be fobbed off , and if you have an endo specialist within a reasonable travelling distance tell them you want to see them as soon as possible , don't be intimidated you are in control of your health ,and all you are doing is taking control of your situation

Good luck , hope you feel better soon , stay positive there are answers out there ,and the right people that can help you , also consider trying the endo diet check out endometriosis , a key to healing and fertility through nutrition Available through amazon etc

Thinking of you

Helen

[Misfit]

Thank you for the replies girls. I feel much more confident about asking for what I need now.

I see the pain team twice a year. They don't seem interested in my issues. I'm still in the same amount of pain since I began seeing them. They try to increase my pain relief but that just causes greater sickness. I wouldn't know how to tackle them as the Doctor I saw there said at the beginning he wanted to fight my case for me and now he doesn't even want to see me any more. I just feel like I'm getting passed around with no hope.

From my laproscopy the surgeon indicated that I have endo on my peritoneum but there also looked to be the start of IBS. I really don't think he looked at my kidney at all to be honest.

I'll ask my GP about an endo support group and I'll also ask him to see a specialist. I've had 2nd and 3rd opinions about my kidney (all from the same hospital) so I'll also ask if there's anyway I can be seen further afield.

I was originally diagnosed with BPD by a psychiatrist I saw in Leeds (only met him the once though! :/) and again by a mental health advocate here in Middlesbrough (again only met him once!). So I've got that diagnosis with only first impressions -.-

I just feel like giving up a lot of the time but I know I need to keep fighting. It just gets so tiresome when you've been constantly asking for help since your teens and you're still no-where near living a comfortable life

Thanks again....Much love to you all!!

xXx

[Hidden]

Lots of hugs. That sounds a horrible situation. I had psychological problems with ptsd prior to diagnosis and I was diagnosed with endo just as I was mentally back feeling well again. It triggered a massive slump with my mental health. I felt so out of control with all the Drs suggestions without them informing me of any pros and cons or side effects - instead of taking any hormonal intervention which frightened me as I havnt heard any positive stories from people about them I have been following Healing Endometriosis Naturally by Wendy Laidlaw - It is a book on amazon and audio-book. Since following it and taking the bio-identical progsterone, and Kefir, etc my mental health has been the best I have felt in over 10 years. The endo is still there, yet I am only a month in. My personal suggestion would be to perhaps try following an alternative path so at least you feel back in control of your life. A side note - Just because you have been diagnosed as BPD the gynaes and urologist people can not use that as an excuse to dismiss you or not do their job. As for following a more alternative approach, unsure how possible that is financially for you as supplements cost a little so you may need say £100 to get the initial lot of supplements. The cream is only £16 and that lasts about 2 months so even if you start with a couple of things it could well make you feel better - even if just psychologically. Reading her book certainly got me out of a big mental mess and despair. Much love to you