Yuku free message boards

Hi
This may or may not help. I have not had ear bleeds. I have had stretches of time in the past when I had nose bleeds around the time of my period - but this does not happen any longer. Re the nosebleeds - I was told that this is in fact not that uncommon for women around the time of their period regardless of endo. It has some medical name which has momentarily slipped my mind but essentially it is something to do with estrogen dilating blood vessels in the nose. However,that aside, this is my story in as brief a nutshell as I can make it ...

I have had Stage IV endo with dense adhesions. Pretty much everywhere including ureters, bladder, bowel etc, etc. Diagnosed around 8 years ago though had symptoms since 11/ 12 yrs. I am now 43 ... symptoms spread out from my period week to other parts of the month in my early 30s. Aside from my pelvic problems I have had over the years some very bizarre things going on. In around 2002/3 I started to get right sided head pain - including my ear. The pain was sharp, sudden and stabbing. It worsened in the lead up to periods. In early 2005, this pain started to spread to locations all over my body - I mean literally everywhere .... but from my neck up ( which is the area you are interested in ) the areas worst affected were deep inside my right ear, my tongue, the back of my throat, my jaw, teeth, down the side of my nose, the area above my temple on both sides of my head, the base of my skull at the back, both eyes, both sides of my neck - but particularly the right. It was absolutely horrific because I would have attacks sometimes hundreds of times a day. It was sudden and literally like being hit with a nail gun which as you can imagine was really distressing - particularly in places like my eyes. The pain was the most horrific thing I've ever experienced .... and I have had some pretty awful pelvic pain with my endo. The closest I have come to finding someone describing a comparable pain is people's accounts of something called trigeminal neuralgia and glosspharangeal neuralgia. However, this is not what I have as the pain can happen anywhere around my body - not just my head. The worst of these pains went on for about 3 and a half years. Currently, they are much calmer .... I don't know if this is because they have genuinely calmed down or whether it is because I am on so many painkillers. However, instead of getting hundreds of attacks every day I now perhaps have 10 or so and they are much less intense - I will occasionally get a real shocker out of the blue. There is definitely a rise in initensity and number in the 72 hours before a period - but overall it is much more liveable with ..... I am not sure that I would have been able to go on if they hadn't calmed down .... and I am not being dramatic by saying that.

In addition - there have been other symptoms. When the 'stabbings' were at their worst I also experienced burning sensations in the soles of my feet, numbness and tingling eg. across my forehead, cheek, fingers. My left lower leg also went numb for a while. What may be of interest to you is that even prior to my endo diagnosis I used to be able to predict my period even when I was having irregular cycles due to the fact that I got a strange pulsating like sensation in my right ear .... it is a really difficult sensation to describe but it is incredibly intense. I still get this and in fact it has been getting worse again lately ... nowadays it is still worst in the lead up to periods but it can happen anytime. Recently, again in the lead up to periods, I have been waking up with very bad ear aches in my right ear accompanied by a throbbing pain under the right side of my tongue at the base. Over the last few years I have had three cranial MRIs .. obviously initially they were concerned in case there was a possibility of something serious going on ( i.e. MS or a tumour or something ). All MRIs have come back clear. They can find nothing wrong with my right ear either. The only good thing about it all is that thankfully ( possibly because they have witnessed stuff ) no one in any department that I have been through e.g. gynaes, neurologists, rheumatologists, ENT etc, has ever doubted that something is going on .... they just don't know what it is. A few theories have been put forward ...
1. That possibly I am one of those freaky people that actually does have remote endometriosis and it is just so small that it doesn't show up on scans.
2. That there is some sort of hypersensitivity to estrogen levels going on which is sparking off my nervous system.
3. That my nervous system is just misfiring signals generally because of an accumulation of pain over the years.

There are other things - but to be honest too much to write here. I guess one thing that I have in common with you is that I get a severe pain in my upper back which spreads to my right shoulder and sometimes feels as though it is coming through to the front. It is worse on taking deep breaths. I have been told that this is probably an irritation of my diaphragm - i.e.endo. Again the worst episodes are 48 hours prior to a period. Also, like you I do get very swollen glands under my chin - on the right side ..... I feel like I have  a lot of things going on on that right side .... but they don't seem to think there can be any connection. Mmmmm ??
Anyway, I don't know if that is of any use or not but I thought I should answer .... I don't think I have ever come across anyone else who has mentioned their possible ear involvement .... I'd be very interested to know if you get anywhere. Write everything down ... and don't be apologetic when you are explaining things to doctors. Believe me, given my bizarre array of symptoms I know that it is difficult to not feel a bit paranoid .... I used to think 'God - they are just going to think I am nuts ! ' ... but be confident and just tell it as it is - you never know you might come across someone who has the answer. If you do - let me know !
love
Sue

Hi Col - I have occasionally started a thread on this subject in the past but have not really ever come across anyone else with my particular set of non pelvic symptoms .... though people with endo do sometimes seem to develop odd things - so I don't think we are alone in that sense.

A rheumatologist that I was seeing for a while ( they had to also rule out lupus by the way as I was getting strange discoid rashes all over my body and neck over a period of 18 months ... in the end they felt it was just pityrasis rosea ) felt that the key to at least some of my problems was oestrogen based - she said that more research was recently being done regarding the impact of hormones on neuropathic pain but that there was actually quite a limited understanding.

As a matter of interest ... I was wondering whether either of you had a history of glandular fever. I was diagnosed with it on 3 occasions in my mid teens to mid twenties - each time the doctors concerned said that the test would come back negative because it is unusual to have repeated positive tests over such a long time frame ( though I've heard of other people ). Anyway, I have always wondered if my immune system was slightly dodgey. My swollen glands stem back from that time - it is almost as if they have never really sorted themselves out properly. I too have feverish / flu type feelings and always did have in the lead up to periods i.e. long before my diagnosis of endo.

In terms of coping J - it is very difficult isn't it. My saga of regular ill health ( the type that has a daily impact that is ) has been going on for 8 years. I've had 5 ops in 7 years - some of them pretty major. Putting all the other things we have been talking about to one side for a minute, I guess the things that cause me most trouble right now is my pelvic pain, leg pain and my bladder and sometimes bowel symptoms. I won't bore you with all the details just now .. but it is difficult and frustrating. I have not been able to work at all for a good couple of years now and that fact depresses the hell out of me. Anyway, like you Col I have very much had to adopt a wake up and see approach to life. Some days I can achieve more than on others and I guess I have learnt to appreciate that time and make best use of it. It is difficult to make plans J - I understand where you are coming from with the wedding. We do our best not to let my endo rule everything in terms of looking forward but we have just had to accept the fact that inevitably we have to adapt to situations and make cancellations. I try not to let other people's attitudes affect me these days - though I know it's not easy. For example, talking of weddings - I did go to one a few weeks ago. I spent about 50% of the time discreetly going off for a lie down and to top up pain relief ( luckily it was at a hotel so we had access to various relatives rooms). Most people understood completely and did not make a big deal of it - realising that I was disappearing because it was absolutely necessary. A few people - generally distant relatives and aquaintances - turned into medical experts for the day and started to grill me on why I didn't do this, that or the other. I find that kind of situation annoying and if I'm not careful it can affect my confidence because nobody wants people to think that they are some kind of hypochondriac .... but the truth is that those people who have this kind of reaction are generally either a) pretty ignorant and b) really uncomfortable about the idea of chronic illnesses and so go on the attack out of a kind of fear ... they don't like to think that it is a very real situation because if can happen to you something similar could happen to them.
Time for bed - keep in touch.
Sue

Hi J - sorry, I was having a particularly rough day yesterday so didn't see your messages. Thank you for sharing this information with us ... I am going to have to read through it a couple of times before it makes sense to me - I have much more of an arts based brain ! However, the theory that the lympathic and circulatory system may act as a means for endo to travel to remote sites has been around for a bit hasn't it - though as with all things endo, there has not been much research into the reality of it. My experience also is that some gynaes are more open to the theory than others - it will be interesting to see what your guy thinks. My 'stabbings' when they were at their worst pretty much happened throughout the month on a daily basis - but whereas I may get 50 -60 bad ones on ordinary days ( I didn't count the mild ones ), the really intense ones would more often than not zoom up into the 100's in the 72 hours before a period. In fact the first time I had one other than in my head / ear ( which had been going on for a while ) was the night before a period started. It was in my finger and I remember it distinctly. Nowadays, as I said ealier - the stabbings are generally much less frequent and less intense but there is the same increase proportionately in the lead up to a period. Other nerve type pains also occur e.g. I feel as though someone is trying to pull my big toenails out - not very nice. You asked about how long the non pelvic symptoms lasted for after a period I think ? The thing is, they don't ever go away completely - but I guess my glands for example, tend to go down towards the end of the period itself; the worst attacks of my upper back / shoulder pain do not tend to last past say day 4 of my period; my ear symptom fluctuates more through the month - but the worst patch around my period again tends to wear off around day 4.

My pelvic pain is these days caused by a combination of active endo, adhesions and damage caused by past endo - it is difficult to know where the percentages lie. Bladder and bowel problems do not help. I am on a fairly heavy concoction of painkillers which I have to take daily now - though I modify the amount according to the day. In the past I have also been put on various anticonvulsants to try and address the possible neuropathic source of some of the pain. However, a) they never seem to work and b) I don't react well to them in terms of side effects - In fact I have just stopped taking a trial of pregabalin - I don't think I will be trying similar drugs again !

You asked how long it took to accept a diagnosis of endo. I guess the thing to remember J is that endo has such a wide spectrum in terms of severity and therefore the severity of impact it may or may not have on a person's life. Some people may have very successful treatment early on and may go on to carry on with their day to day lives having limited or no problems. I think during the early stages of diagnosis it's important to know that - sometimes it can feel a bit daunting especially if you come across a lot of negative stories. I guess unfortunately I do sit somewhere on the upper end of that spectrum. I have had to have a lot of treatment and sometimes feel as though I live in hospitals. I think for me acceptance has been a gradual thing and to be honest there are days when I still get angry and frustrated or depressed - those feelings are often less to do with the pain and more tied up with the things that endo has caused obstacles to e.g. now being unable to work. Unfortunately, my endo was so severe that it did have an impact on my fertility - we have not been able to have children - so again - that is a big thing to get your head around and like any kind of bereavement it is something that probably never really goes away completely, it is a case of finding ways to cope and sometimes coping might just be about alllowing yourself to grieve. I do have hope that eventually my health may improve to the point where I can do some kind of work. Fingers crossed.

At this stage J I think one of the best things you can do is become as informed as you can so that you have a good overview of all the possibilities and treatments. I did a lot of reading at the beginning and I think that this helped me a lot in terms of feeling as though I had some control. It is also good to find people that you can talk to whether that be here or elsewhere. As we have already touched on, you will find that some people just can't handle talking about chronic illnesses ... and endo is a particularly tricky one because people often feel uncomfortable generally about women's health issues. The most important thing I think is to try and carry on with life as much as normal when and if you possibly can ... there will be adaptations that you may have to make - but don't lock yourself away. I really hope that you get the treatment and support that you deserve so that your experience of living with endo can be as positive as it can be.

Take care
Sue

Hi
I'm not really sure that any of us are saying that the cause of these various things may in fact not be endo related. Obviously it is important not to fall into the trap of seeing connections where none exist. However - when you have been through years of test after test and department after department each trying to find somethingh in their own field to squeeze your symptoms into - only to come out the other end with everyone saying well ' we can't diagnose anything specific - the only thing we know you definitely have is appalling endometriosis' .... you will appreciate why it is also healthy to not totally dismiss the possibility that at least some of the symptoms may in fact be endo based after all. In my own case, even various consultants have said this to me.

Just to clarify - my own head based pain ( and elsewhere ) is very much not headaches ( though I do get migraines sometimes ) - they are more like horrific electrical stabs that each last a second or two. When at its worst it really is like someone holding a nailgun to my tongue, foot, eye, knee, wherever and firing without warning. As I have said they have calmed - but a while back I used to spend most of my day screaming . I've had two separate courses of zolly. The first time - after initially making the non pelvic symptoms a lot worse - things calmed and I had some limited relief for a few months. The second course three years later had no impact on either my wierd non pelvic symptoms or my pelvic based endo ( it actually grew during the time I was on it - a fact which was confirmed by MRIs, other scans and eventual surgery). GnRH drugs are helpful as a diagnostic tool in some situations but they are by no means completely accurate in ruling endo in or out. The thing that has appeared to make some difference for me re my wierd symptoms is a heavy increase in painkillers - though none of these painkillers are specifically for neuropathic pain.

When you have bizarre, painful and undiagnosed symptoms it is very difficult to talk about them - but I think it is healthy to. Having such symptoms is like having the isolation that can go had in hand with having endo sometimes x 10. Ultimately you do have to find a way to live with them - because what is the alternative ? However, if sometimes looking for an answer is what keeps you sane then I don't think there is a problem with that. I don't obsess about my endo or other symptoms which may or may not be endo related ..... but at the end of the day, it would be nice to have an answer at some point - and I suspect one day ... even if it's decades away or longer there will be one somewhere for someone, even if it is too late for me. We will only get that answer by sharing information and asking questions and pushing medics to investigate.
Sue