Advice needed

[bohica666]

Hi, my wife has endometriosis and I am wondering just how exactly I can convince a Dr about the level of pain she is in?

Her journey started with very heavy and long periods on average between 10-20 days of very heavy bleeding, then she would have 3-5 days without and then again 10-20 days bleeding, she can bleed through a tampon plus a pad plus knickers plus trousers plus a quad thickness bath towel in less than 10 mins.

She was treated for her periods with mefenamic acid (spelling?) plus others, she is very difficult to treat due to being super sensitive to EVERYTHING. I mean you cant even buy her a bottle of perfume for her birthday/Christmas as within 2 mins her skin looks as if you have taken a flame thrower to it.

She was also diagnosed with PCOS however then (about 2 years ago) suffered a very mild stroke (she recovered just fine) BUT her medication for her periods/PCOS was contra indicated with her stroke meds so she was taken off the mefenamic acid etc which caused her periods to go from reasonably controlled and bearable to completely nuclear and painful beyond words.

She was after about 7 years of fighting sent for surgery partly to confirm the endometriosis and also to remove her right ovary which had a huge cyst on it (it was literally the size of a can of coke).

They managed to get the ovary out with the cyst, confirm the endometriosis BUT were unable to do any of the excising that was planned as she had a "very violent reaction to the gas used for the surgery" I presume this is Dr speak for they almost lost her on the table because they informed us in no uncertain terms that she is no longer a candidate for ANY surgery at all due to the reaction.

Since that time our Dr had been reducing the amount of pain medication she was getting (its an opioid because you guessed it she reacts to every single other pain med available)

Now you have a potted history can anyone think of any way I can convince this Dr that her pain medication is literally a life saver because without it she is reduced to the foetal position on the couch rocking back and forth, she can barely stand, she can barely manage to walk to the bathroom (with my assistance) she barely sleeps because the pain is so much she is constantly awake for 2-3 days straight then she will crash for 12-16 hrs then the pain wakes her up again.

Yes she uses all the recommended things to reduce her pain level heat bags, tens machine, stretching, short quizzes and crosswords to distract herself its so bad she cant even get out of the house to attend medical appointments (she cant walk and she cant drive she is the family driver) so with all that information had anyone got any suggestions as to what I can say to a Dr that thinks he knows best when his actions are just dumping my wife in a complete world of pain and depression?

Thanks for listening because sometimes your carer needs help too.

[endowarrior12]

I’m so sorry to read your post. My advice is maybe to keep a pain diary for a month, note down everything how she feels etc. It helps them see a picture of everyday life and her suffering. I resorted to this in the past and having my husband with me at appointments helped too as he could also describe the pain I was in and how it affected our everyday lives. It’s worth a try. I know take regular tramadol and have done for over 2 years, it’s allows me to function at least. Hope this helps 😊

[bohica666 in reply to endowarrior12]

That is the problem the Dr is enforcing the NICE guidelines on the use of opioids and reducing them to take her off but she has no other medication she can take, the Dr does not listen when we tell him how she ism he does not listen when we tell him that the guidelines are optional and he does not listen when we tell him that the guidelines or their use should not completely destroy a patients quality of life we have complained, asked for him to reconsider but he just wont move and because we have asked he has now put on her medical records she is NOT to be issued any Tramadol ever and marked her as s drug seeker I can not tell you what I think of him lol I would get banned.

[endowarrior12 in reply to bohica666]

He sounds awful. Can you request a different GP at all? Sometimes a different doctor makes a huge difference

[bohica666 in reply to endowarrior12]

it would make no difference he is one of the "senior" Dr's at the practice (named partner sort of thing) so basically what he says the more junior doctors dare not do any different he is a very nasty piece of work imho we are having to consider moving practices just so she can get some medical attention.

[endowarrior12 in reply to bohica666]

Sounds like a plan, sorry I couldn’t be of more help

[Moon_maiden]

Hi

Thank you for being so understanding of this condition and how badly your wife is suffering.

Keep every request in writing, use the online consultation form that’ll be on the surgery website. What you’ve said here I’d repeat on the form and tell them what is needed, don’t put it as a question teary can say yes or no to.

Tell them that she needs a referral to the pain clinic, if you can afford it, might be worth a private consultation with pain consultant.

I don’t know if she’s tried Nefopam, it’s non opioid. It is more expensive but GP should try it if they don’t like opioids. I’ve been using Oramorph for several years and not addicted, I take it once a day, occasionally twice and sometimes not at all, depends on what I’ve done.

I hope something can get sorted soon 🤞

[bohica666 in reply to Moon_maiden]

Hi Moon, we put in a formal complaint we detailed all the problems that led us to this point, the early treatment how the stroke made it necessary to stop that treatment, how when she finally got surgery that door was closed to us due to her reaction. We literally laid it out step by step with dates what Dr prescribed what medication its effect etc etc, tis treatment has spanned several years and several doctors so we were of the opinion he had not read the history they are busy after all so we tried to help out, we have been referred to a pain clinic twice first time we were told she was doing everything that is possible to do to alleviate her pain and that because she could not take any other pain meds due to complications her Tramadol should NEVER be removed, second time was just a month or so ago after I asked the Dr what his plan of action was going forward, his reply "nothing I dont have one" I pointed out that he should not make his patents quality of life worse and that was when he referred us to the pain clinic for a second time (after he had already had the note put in her notes about no Tramadol and drug seeking) the person there said there was nothing they could do for her as she was still doing everything possible to reduce the pain but they could not overrule the GP on the Tramadol. I understand the guidelines I really do but though he is enforcing them he is not enforcing ALL of them there was NEVER any consultation before he decided to remove this medication, and there has not been any consultation at every step to see how my wife is doing with the reduction or any regard at all for her increasing pain levels or how that was affecting her quality of life, the guidelines allows for situations where they dont fit the case where they are not in the patents best interest but he is just ignoring that part of them all he has done so he does not have to deal with us is work out how long it would be till she was on zero Tramadol write the relevant prescriptions and send them off electronically to the pharmacy so he was not bothered with requests for the regular prescriptions every 14 days and he moved on to the next patient. I have to say in my 65 years I have never met a more callous doctor in my life with no regard for the harm his actions are causing, some doctors are that way they see themselves as gods this one certainly does. All these problems stem from one simple request that the practice prescribe sufficient tablets to last the time of the prescription ie a max dose (required when she is on a period) of 5 tablets in 24 hrs, they were issuing her with 50 tablets which if her cycle was anywhere near normal should have been enough but as I have previously said I think she bleeds anywhere between 10-20 days then gets a maximum of 5 days where the pain is just "normal" not boosted with the period, so if she bleeds for 12 days that alone is 60 tablets leaving her 0 for the days remaining. Please tell me it was not an unreasonable request? He made a mistake with his research of the problem assumed it was normal and messed up, I asked him to correct his minor mistake (I was not even mad its an easy mistake to make) but here we are he is punishing my wife for his mistake.

[Moon_maiden in reply to bohica666]

You are so right in pursuing this, I am so sorry that you are both having such a stressful time.

I have found that GPs at my practice will go with what a consultant recommends, I don’t understand why your GP is being so ignorant and arrogant, makes me so cross. Opiates are only addictive if someone isn’t in pain or if they are in pain and the medication doesn’t work, which does happen, Tramadol is pretty mild as far as opiates go in the list. The pain clinic consultant could write to the GP again and recommend they get reinstated and the dose. I’m not sure if there is anything in the NICE guidelines on Endo about GP support and medication.

I don’t know if you can afford a private consultation and pay for medication, that would potentially be an avenue to consider, a doctor can prescribe either three or six months medication at a time, but they might not want to do that with painkillers.

It’s certainly worth considering changing GPs but ask to speak to a dr at the practice to get their views on prescribing Tramadol. Endometriosis is in the top twenty NHS most painful conditions so GPs should be aware of that as well.

Let us know how you get on. She needs a proper face to face appointment, unfortunately when the pain is there as well so they can see how bad it get, which will be horrible for your wife I know.

[MrsPaddingtonBear]

Hello

What a fantastic support you are to your wife! Has she tried any hormone treatment, the pill, zoladex, prostap etc.? Is there a pain clinic at your hospital they are usually great in being able to combine medications to get the right balance for people who have difficulties/allergies. Is there a possibility of changing the stroke meds to a different one that won’t interfere? I have to keep a diary and take it to my consultant appointment so he could see just how many day I was bleeding for, when I showed him I’d been bleeding constantly for 7 months he finally took action. He didn’t want to bother looking at the huge chart I’d written out, but I was persistent. I had a hysterectomy 8 weeks later. Sadly when you have allergy surgery that would usually be advised can be very tricky. I wish you both luck, carry on what your doing to help your wife, your doing amazing and she is such a warrior.

[Angellouise]

I’m so sorry your wife and you are going through this. Tell the Doctor she just can’t live without some pain relief. I can’t imagine her being denied this. I would do a pain diary and show the Doctor how her life is affected by just the little things we need to do each day. I wish you and your wife all the luck in the world. Where I live we have a pain Doctor who gives you what you need if the GP doesn’t want to

[EndoCoeliac_Woman]

Hi. I am impressed by the support you give to your wife. She is very lucky to have you.

Other than what already suggested I am thinking about going big. It is not the easy way and might take time. But get supported by the endometriosis UK association or a chronic pain association and get your story known. The associations can provide you with a resonating platform for what you are experiencing. You might get the power to bargain with your Dr once they see the outrage they created among the audience. The social media era has pros and cons, but a good thing of it is the possibility to get high numbers of people supporting you. You might even get contacted by a doctor willing to help.

Best of luck

[BloomingMarvellous]

You are clearly right across this and are doing your utmost to help. Often Drs start listening when the male partners wade in but here perhaps they are more resolved agin . An unholy trinity.

This is obviously complex both in terms of your wife’s medical conditions, the state of treatments available for endo and the stubbornness of your GP practice. Somehow to pick your way forward the issues need to be defused and picked apart to lay down the why and the options that you may have and are worth considering both medically and non medical. Teasing apart where the GP is right not to follow an avenue of treatment and where they are unknowing will also give you hopefully a steer on the sort of endo / genetic challenges your wife is facing.

1) It sounds as if your wife may have issue around Progesterone tolerance or resistance. This can make the fibrogen levels rise in the blood and prone to clotting and by default strokes. Your GP may not be across the progesterone intolerance aspect but be aware of the links between progestins and strokes . So hence the use of hormone treatments for endometriosis aren’t wise and would likely only increase her reactivity, inflammation and allergy. Indeed there is some evidence about that progesterone can actually feed the endometriosis in such phenotypes. Your GP is therefore acting appropriately , if in some ignorance of the wider ramifications, with their medication bans as deeply frustrating as that is. You don’t mention Amitriptyline or Nortriptyline here as having been tried and I don’t have a current MIMS to provisionally check whether this might be contradicted or not but worth exploring . The latter has less side effects.

Your long responses seem to suggest she has high histamine levels and quite likely a very inflammed gut which can arise with all the hormone chaos and stress . No doubt you’ve looked at anti inflammatory type diets but I’d say do read Katie Edmonds, Heal Endo book and see what might be gleaned from that . I worked out before I found her book that my endo and pain is likely fuelled along a certain genetic pathway that creates a number of family issues so I targeted that route to start healing my gut inflammation, reduce the nerve pain and keep ontop of the lesions. I am not as reactive as your wife by a long stretch but progesterone/ progestins are a problem for me too. Long term standard pain relief and opioids were worsening the condition for me . For me it’s been around Vit E, Omega 3 ( EPA/DHA version) Reservatoral, Quercitin with Bromelian. Omega 3 at dose, (professional quality purity assured not high street sort ) sorted my nerve pain and in the long run has really healed my gut. Healing my gut meant I’ve been less reactive and far less inflamed. For a long time I found Levagen really useful to reduce Mast cell activation and pain relief. Finding any key food allergy may also help overall reactiveness but am sure you’ve got that in the bag. If all this seems beyond you managing finding a good medical functional medicine dr - few and far between in the UK might be your best call if you can afford it .

I’ve also had enormous help in managing pain episodes with Curable App despite much initial scepticism as I’d done a lot of meditative and CBT etc to little avail. They do 2 week free trials or six week ones if GP prescribed thereafter it’s a small amount annually. It’s been a godsend.

I really hope you find a way through this chaos and pain. Your support does you proud and I hear both of your pain in the situation you find yourselves in.

[PotatoSalad in reply to BloomingMarvellous]

Hi BloomingMarvellous, great response, can I ask where you get your omega 3 etc at ‘(professional quality purity assured not high street sort )’. Presumably not on prescription?

Bw

B

[MaggieSylvie]

I am so sorry that your wife has not been helped so far. I think you have a battle ahead of you, whichever way you look at it. But your question is how to get the dr to understand/believe the pain. I think the only way would be to request a home visit so that he can see with his/her own eyes how your wife is in the foetal position with heat, TENS, whatever she is trying to abate the pain - not to mention that someone losing that much blood would require a transfusion from time to time. A female doctor would probably be the most understanding - oh gosh, I've just read further down this string, and I think your first step would be to request a chage of GP; the one you have has no understanding, compassion or empathy. Tramadol, if it works at all, would help her to sleep her way through this. What a dreadful situation to find onesself! All fails - try contacting your MP. You do need a hug, not least for your understanding.🤗🤗🤗🤗

[Stitchrunner1]

I am sorry but I am going to be the bearer of bad news. There is very little out there that will help. Research is poor. Medication is very poor and attitudes worse still. I have endo, my daughter has endo and in the 40 years between us little has changed. I am so pleased that as a man you have stepped up. My advice is that you, as a valuable asset to the campaign, keep up pressure on governments to fund research that is woefully inadequate at present. Help the Sisters of Endo change the attitudes of firms and employment places to recognise that endo is a health issue not a weakness. And maybe buy you wife a lovely hot water bottle. Thank you for stepping up. I am so very angry that, year after year, nothing really changes. Please help us to change the dreadful attitudes and lack of funding. Much understanding to your wife. It is a horribly underestimated health issue.

[Cocoacupid]

hey you are a true gent looking after your wife. I too am sensitive to certain things meds etc however I didn’t have reaction to the gas on my surgery at least I don’t think so my surgery was three hours I was also in recovery for about three and a half hours. I have fibromyalgia and autism which can give you sensitivity’s to anything. Don’t give up hope keep fighting for your wife. Go get a second opinion from another gp practice I’m not being funny but this gp stopping your wife from one of the only drugs she can take for pain is stupid so this is causing your wife and yourself. Unnessaraly stress and also can contribute to depression . Being in pain sucks . If you get another gp please ask them to see a be pain clinic dr who specialises in endo so your wife can have a holistic approach to being able to manage her pain a little better. Take care x

[bohica666]

WOW so much good advice here I thank each and every one of you for your input it will take me a bit of time to sort through it and cherry pick what I think can be done for the wife, I have looked at changing practice but so far every practice we contact will NOT prescribe addictive opioid medication (that is on all the application forms) you cant talk to one of the Dr's to discuss their statement because your not a patient there and also having the existing Dr label her as a drug seeker and dependant on Tramadol is not helping either, I think my first option is to see what help/support we can get from endometriosis UK association perhaps they wont want their practice named in a national forum who knows I am currently considering looking for legal representation to bring a case of lack of duty of care against the Dr. All I can say right now is "Watch this space" I will get this sorted or go down swinging women with this condition should NEVER be left without pain relief that can lead to self harming or depression or even something more final if/when they can stand it no more (I know about long term pain I was involved in a train crash where I was the driver and messed my back up pretty good) so I do truly understand what she is going through.

[User_2468]

hi there I’m so sorry to hear about your wife’s situation. I’m a 32 year old that’s recently been diagnosed. For the past 8 months I’ve been taking dienogest to completely suppress my period. Although for me this is not a long term fix, I wonder if your wife is able to have a progesterone treatment which could potentially stop her periods to help her manage?