Frustrated, defeated and confused

[Reen_Bean]

Hi everyone.

Today I feel defeated, crazy and very frustrated. I wanted some advice from others living with this horrible disease.

I had my lap done 22/07/14, nothing was treated as stage 4 endo was diagnosed. My consultant has arranged an appointment for me on the 20/08/14 to discuss surgery to remove the endo.

Initially the pain of the surgery subsided quicker than I had expected but on Sunday afternoon my endo pain hit hard, completely flooring me. I took my normal concoction of 400mg iburophan , 60mg codine, 1000mg paracetomal and 100mg tramadol all with little affected, so I went to A&E who treated me with morphine to ease the pain and I was sent on my way. The pain never fully subsided so I took my pain relief through the night, then yesterday afternoon the same intense pain kicked in so I went to A&E again. The doc there rang gyne as I had been in the day previous, after consulting them she came back to inform me that gyne said co-codamol and iburophan is really all that is need to lift endo pain and that I shouldn’t be coming into A&E. I was so angry and embarrassed. In my opinion I have a high pain threshold, but the pain was so intense and severe the normal meds didn’t work.

Sorry for the long post, I wanted to know if anyone else has experienced this intensity of pain? Or am I being weak and not dealing with the increase in endo pain? the doctor last night made me feel like im going crazy and this is all in my head.

[sharli_Klein]

I get the same floor pain were it gets so bad it literally makes me fall through the floor and can't move but I also have ovarian cyst's and when one or a few will rupture is when my pain gets to that point or if I do alot of lifting . When this happens my husband rushes me to the ER and they drug me up and send me home but they don't let me leave intill they get my pain down to at least a four but after 18 yrs of dealing with this I know what pain. Meds Work for me and for the kind of pain I have at that time. I hope this helps you some just talk to your Dr

[Reen_Bean in reply to sharli_Klein]

Thank you for your reply. It does help to know that it isn't just me. I'll talk it through with my consultant when I see him again.

[daffodil]

So sorry to hear you are having such pain and not being believed by the very doctors who should ease your pain.Sadly many of us have been in your position of having extreme pain ,usual meds not working and being sent on their way from A and E with something very minor.How dare doctors assume to know how much pain we are in ! We all do have different pain threshholds but I reckon us ladies with endo have pretty high ones and do know if a pain is severe.

I have suffered endo since age 14yrs and spent years being admitted for mystery abdo pain,without any diagnosis until I was 32yrs.I was disbelieved,even referred to a psychiatrist( which I refused) for so many years and know exactly the feeling of am I really overreacting,is it in my head?

I wonder if you may have had a burst cyst? Or a leaking cyst.I have had a number of these "follicular" cysts( not endometriomas) burst and each time I have collapsed,passed out and been unable to move or breathe.Each time I have been whisked to Anad E ,with gas and air all the way,then its suggested that co codamol will help -when I'm on max doses of much stronger drugs.

Last time it happened was in December and at least I was given a pethidene shot,but only one as they insisted that dihydrocodeine would now work as the cyst had burst.I was given antibiotics for a kidney infection and sent home the next evening.None of us would go to A and E if our normal drugs and comfy beds would do.

Please go back to your GP or call out of hours GP and insist that you need better pain relief.There are ladies here on morphine due to their endo pain.I wish I was ,but am allergic!

The other thing you could ask for is a referral to a pain clinic where they would try to find you a drug concoction to help.I would say that the regime you are on is pretty strong and if its not touching it then A and E is the only option.

If you r appointment with gynae is 20/8 I imagine it will be many months before you will get your lap, unless this is your pre op assessment??You need to have better pain relief in the meantime.Have you had periods stopped-this is also important if you have more than a few months to wait for surgery.

How is your pain tonight? Did they do an ultrasound?

Please know you are not alone and many of us really do understand the intensity of endo pain.I have been through many painful things- 2 x complicated labours ending in csections,meningitis,ME pain but nothing compares to endo pain.

Hang in there as we are all here to help.There are fewer of us on here now,since they changed the forum format,but don't feel alone.

Sending you a big hug.

[klpgemini]

You poor thing. So sorry to hear about your suffering. First of all don't be made to feel like it's all in your head. It's your body and nobody knows it better than you. I was diagnosed with endo 11 years ago, and I too have pain that floors me, can't get up sometimes. Can be embarrassing in public. It's good that you are seeing a specialist this month, opportunity to really lay down your case in detail. They are there to help so don't don't be fobbed off again with pills. Tell your specialist exactly how painful it can be for you. If you feel you are not being taken seriously, you can always get a second opinion. Good luck X

[didymus]

Do not feel that you are alone and do not feel like you are going mad. F*** that particular gynae (excuse my French) - they have absolutely no idea what they are talking about. Is this the same gynae who is treating you? If so - walk away and do not look back. Find someone else who knows what they are doing.

Frequently, the only people who catch a glimpse of what severe endo pain is actually like are those we live with. I have daily pain - some of which I suspect might have a number of members of the public rushing to A&E in itself. However, my last truly horrendous event was about a week ago. I felt like I was giving birth to alien triplets the pain was so intense. Bear in mind this was despite taking 5 different prescribed painkillers including oxycodone. I was vomiting and losing control of my bowel all at the same time. I could not get to the loo without my partner virtually carrying me and we camped out in the bathroom for long periods of time. Sweat was running off the end of my nose, my hair was soaking wet and my bed clothes had to be peeled off me. The worst of it lasted around 5 - 6 hours. You can not fabricate that kind of pain. The kind of pain where your body eventually starts to shake out of sheer exhaustion. Where your breathing goes into a kind of automatic pant. Where you can't help but let out pitiful wimpers and moans. I didn't go to hospital - but I have resorted to going occasionally in the past. We have had no alternative but to get an ambulance a couple of times - I've felt guilty about having to call... but the reality is when your pain is that bad you have to get the timing right - if you leave it too late there's no way you can get to A&E under your own steam.

I was working it out the other day - I've been in that pathetic position ('pathetic' in the true sense of the word), hundreds and hundreds of times in my life. I started my periods aged 11. By twelve they were often horrific. By my mid 30s it wasn't just happening during my periods anymore - just whenever the endo fancied a scream.

If it helps, tell your gynae some other women's stories. Read her that paragraph above! Tell her that a couple of the endo specialists who have treated me have had no hesitation in comparing very severe endo pain to labour. Apparently, it's very common for endo women with severe symptoms to leave things way too late in terms of getting to hospital if they are about to give birth. They have an expectation that labour will be a lot worse than their endo pain and because they have built up such a high resistance to pain, that expectation is not fulfilled. I can't comment on this personally as I have never been able to get pregnant. I suppose it depends on the individual case. I do know of someone whose appendix ruptured - again - the pain she was experiencing as warning signs with appendicitis did not touch the level of pain she experienced with endo - so she did not push for treatment in A&E when the doctor told her to go on her merry way i.e. she did not look in enough pain to him because she was so used to dealing with extreme pain - so he neglected to check her out properly.

So don't feel alone. We endo women are made of tough stuff. Endo comes on a scale and your gynae should be educated enough to understand this. Some people with endo may well get through their life using ibuprofen and paracetamol. However, they may only have relatively mild endo / mild symptoms or they may be at a point in their life before their endo has become very aggressive. You can not squeeze everyone who has this disease into the same box despite what your gynae might think. For example, despite the fact that I had horrendous periods at the age of 12, 20, 25 etc and clearly it seems obvious now to my doctors that this was because I had undiagnosed endo, I would not put 'me' as a 20 yr old endo sufferer in the same grouping re medical needs as 'me' as a 30 odd yr old at the point at which I was diagnosed and was in daily pain. I do think of myself as a 12 year old kid crawling to the loo and vomiting over the side of my bed and wish that I could give myself a big hug though.

Be strong and don't let that bloody doctor try and normalize or diminish your experience of pain. She should be ashamed of herself. Hopefully one day someone will lodge a complaint against her. There is nothing normal or insignificant about it! Take care x

[Petunias]

Hiya. So sorry you're going through such a rough time. It does sound like your gynae isn't an endo specialist because of how you've been treated. I know it might feel like a step backwards but I would get yourself referred to an actual endo specialist centre who will hopefully treat you better. If you have stage 4 you really need to have someone you can trust looking after you Theres a list of the accredited endo centres on the BSGE website bsge.org.uk Have a look, find the one you would prefer to go to and at your next appoint in a couple of weeks you simply explain that you would like to be referred to xxx . Alternatively if you can afford a private consultation charge you could book in with one of the specialists from the list privately. You do not need a gp or hospital referal to do this you can self refer. Then the specialist may agree to transfer you to their NHS list. Its so important to have a specialist who kniws what they are doing so that you don't just get fobbed off and also one that is capeable of surgically excising endo nit just burning it off. Keep us posted and keep putting one foot in front of the other xx

[Charliechocolate]

You poor thing. Please don't think you are going crazy., I had the same agony and it is very real. I think you need a different gyne ? I think you should consider getting a second opinion and then think about having laser surgery ? My endo has settled down but if that horrific pain comes back I will be straight in surgery.

I feel for you. Do not be fobbed off or made to feel crazy!

[Reen_Bean]

Hi everyone!

Thank you so much for all your replies, if im honest im a bit teary reading them. Thank you. Yesterday the pain died down to what I would consider a normal level of pain, so its manageable with the meds I have. The gyne I’m with comes highly recommended and is an endo specialist, even fighting to get an endometriosis centre into Northern Ireland, so I was particularly confused at how I had been brushed off. As a result of the treatment I received in A&E I called my consultants secretary to find out what was going on to be informed that he had not been contacted about my visits to A&E, so I was told id get a call back. Only 20mins later I received a call from his junior partner explaining that the Gyne Reg who was on call the nights I went in where contacted and that my consultant wants to see me now on Monday to discuss the plans for surgery. She informed me that all they can prescribe is what I am already on and if the pain flares which she understood it did, my only option until Monday is to attend A&E for morphine.

It’s not a perfect solution but I understand their reservation to prescribe morphine for home use when im now being seen on Monday. At the moment I still have faith in my consultant (from the call I received he was horrified that my notes hadn’t been passed on and his colleague was very aware of the reality of my pain and condition). However I am furious and have no faith in the NHS; how can a gyne reg not understand endo, its ridiculous. I am glad that my appointment has been moved albeit I am terrified about being giving a run down of the extend of everything but I’ll cross that bridge when I come to it. Thank you all again, sometimes this disease can leave you feeling very isolated and its comforting beyond words to have somewhere to come where everyone not only understands what you’re going through but has been through it themselves also.

Reen x

[didymus]

You're right it is ridiculous. Trouble is, when they are in general medical training student doctors only get around 20 mins worth of input about endo if they are lucky - I know this because I know several doctors personally. Then it very much depends on what they choose to specialize in - even if they opt for gynaecology as their own chosen field. For example, I know of a gynae who specializes in oncology and has a very good rep in that sub-field. However, he knows frighteningly little about endo in terms of what you would expect from a doctor. It is still indefensible though - especially when endo is such a common disease. When you see your consultant, it it feels appropriate, I'd take the opportunity to ask him to stress to his junior staff that endo pain comes on a scale and the level of that pain depends very much on how the disease is acting on any given individual. Getting feedback from patients is one of the most powerful ways young doctors can learn - particularly if that feedback is filtered back to them by someone they have to listen to and cannot afford to dismiss i.e. their boss ;-). Hope things settle a bit for you x