'Not tonight Dear, It might give me a headache!' Or, Stuff PMR/ GCA! It's the Big O headache that makes Doctors sit up and take notice.

[Blearyeyed]

ALERT!!

Despite the humour in this post , this form of HEADACHE can be experienced by WOMEN and MEN TOO , it is SERIOUS and if you are regularly suffering with them you should TELL YOUR DOCTOR IMMEDIATELY ! Don't be embarrassed .

Now for the fun.

Anyone who read my previous post about my test for Cryoglobulinemia last week will be glad to hear the results were negative , there was no need to treat my blood like an unexploded bomb , I am not radioactive , you can cancel the HASMAT suits you have for delivery from Amazon on one day rush. I may not explode yet!

Some people who read my posts last week will also know as well as picking up those results I was being sent for an Emergency Neurology Assessment because the Consultants became hot under the collar about a particular type of headache I had experienced.

So , I get in with the not one but two Neurologists , I start relating my tale of GCA headaches ( complete with coloured in pictures!) they listen , put these to one side and say , ' Yes , but what about the headaches you have from sexual activity?'

Yes , the GCA was of no interest at all , the only thing causing alarm to their senses was the fact that I had had to give up on any form of amorous behaviour for nearly two years because of the spontaneous blinding temple headache at the point of the Big 'O'!

Ok, I did take pity on my long suffering OH occasionally ( Christmas , Birthdays , Anniversary , Big Match win it's rude not to ) but on the whole any of the bedroom department activities have gone out of the window because of the headpain .

As I pointed out , ' Really 15.... No, 10 .... No , let's be really honest about 5 minutes of pleasure isn't worth all the pain , and it's not just a matter of the big event , trying other forms of arousal has the same effect too.'

This provoked instant worry and has now caused me to be referred for an Emergency Brain Scan , MRI , EEG and Coronary Ultra Sound!!!

Yes , folks , if you have read my posts and replies in the last few weeks it's the ' Big O' headache that has caused it , not the level of insanity that you see in my writing , but at least like Sheldon Cooper in the ,' Big Bang Theory' when people ask on this site if I have gone mad I may be able to say , ' No , I've been tested!'

I had got used to this extra type of deprival over the years and really didn't think anything of it but it seemed to have put all my recent Consultants into some form of apoplectic shock, and then ( and here comes the healing humour ) I suddenly thought , perhaps the idea of a woman giving up sex because of headaches is because they are all Men.

My headaches are creating a feeling a sense of doom in their Male hearts , not their medical minds .

They are panicking , not for me but because....

No longer can they turn over in bed at night to their wives or pretty girlfriends with a wry smile and roving hand and when she proclaims ,

' Not tonight Dear I've got a headache '

they cannot say , ' Trust me I'm a Doctor and I've got a cure for that !'

Because somewhere back in the deep , dark corners of North Wales there is a Woman who can categorically prove that not only will this bedtime behaviour not cure a headache , it might just cause one!!

No wonder they are trembling in their boots !

With this in mind I also began to have suspicions that I might not need these tests at all , but after my brain scan , when they slide me into the MRI , rather than testing me , they plan to lay a Wilie Coyote style trap , grab a bunch of 2 by 4's and trap me in there.

I can see them now scampering about like frenzied cartoon characters , hammering the planks in place with such speed that half the nails are left bent and then finally adding a big sign that says ,

' DO NOT OPEN , NOT EVEN AT CHRISTMAS!'

By doing this they will be able to keep the myth alive that bedtime activities cure a headache for the whole Male race to maintain and save their species from alot of sleepless nights.

Of course , there is a very serious side to this , and if spontaneous headaches during or close to the Big O is an indicator of a red flag in brain medicine , not just a red flag to the hearts of red blooded men , please do tell your Consultants if you suffer from it.

It is important to be checked out , despite the embarrassment it might cause , for Men as well as Women , and can be an indicator of a crisis event if you notice that it has happened to you.

In the meantime , for me personally Abstinence is the only Cure ( sorry OH ,nothing special in stockings this Christmas !).

And please , if you have experienced off-the-shelf sorts of headaches and are willing to share on this post , both comments serious and words of fun may really be of help to others in the PMR/GCA community as it could be a symptom which adds to the picture of our condition or bring some relief like I hope I have done to others who have been suffering with the , 'Big O Ow!!' for years but were too scared to say.

Hope to hear all comments both medically helpful and , as ever, non medically useful but capable of giving us all some well earned stress relief.

Off to hospital until 6pm , but will answer all comments when I return.

Take care all and have as we say here at 'The Asylum' a Good PMR / GCA day!

BEE xx

PS: IMPORTANT ADDITION!

If you have questions on this issue but don't want to reply in public post PLEASE do send me a private message in the chat board and I will answer you there.

AND PLEASE if you have read the post and it doesn't affect you but you think it's important to raise awareness of this type of headache symptom , leave a ☺ emoji or just write interesting post in replies section .

If it becomes a popular post it will be highlighted on the site , and , be highlighted for others to read in the next few days , so anyone suffering from this delicate issue will get the chance to become aware of the seriousness of this condition and be encouraged to tell their Doctors.

Thank you very much. BEE xx

[PMRpro Ambassador]

Truth may be stranger than fiction they say...

[Blearyeyed in reply to PMRpro]

Yep, you couldn't make it up , but it is rather serious and can be an indicated of arterial blockage , leak or rupture , a red flag for strokes and a symptom in the many different forms of arterial disease , I am surprised they don't ask you about it sooner , even if it may seem embarrassing to talk about. Most of us wouldn't think of bringing up these sorts of issues in conversation with the Rheumatologist , it was only because of the Gynaecologist appointment as part of the Behcets checks that it became an issue that I should have mentioned sooner.

Hope it helps with awareness for members on the site though.

[PMRpro Ambassador in reply to Blearyeyed]

Oh yes, I know the potential causes.

[Blearyeyed in reply to PMRpro]

Do you know of any other members or others with GCA or PMR that have suffered with the ' Big O ' headache ?

( not by name obviously but it would be interesting to know how common it is for people with our conditions)

Is there any PMR / GCA advice or links that you know of on the subject and how to prevent the symptoms that cause it?

Bee x

[PMRpro Ambassador in reply to Blearyeyed]

No - really can't remember anyone mentioning anything like it. And no, nothing I can think of offhand...

[Blearyeyed in reply to PMRpro]

I will ask the Neurologist and Rheumatologist for some links and put them up when I get them for everyone when I hear back.

Thanks as ever PMR Pro aka BRAINS

Bee x

[Hidden]

Oh Blearyeyed, I don't know what to say, so I won't say anything. 🙃😲😀

[Blearyeyed in reply to Hidden]

I hope it can help others to know that this sort of headache can be a red flag in these arterial issues , at least I can start the ball rolling in raising awareness of it and hopefully make people feel less embarrassed about talking about it , and realise it is a serious issue.

Maybe it will help some people be caught before a crisis event occurs , or even give an extra piece to the jigsaw puzzle for those who tinker between PMR or PMR/GCA diagnosis.

[Hidden in reply to Blearyeyed]

Well I'm with you on that, yes a delicate subject and the more people made aware of it the safer we will all be become. Just to add to all this and to check my luck, I'll see if the OH is up for it, just to check it out. That is if I can remember what to do 😉😀

[Blearyeyed in reply to Hidden]

Thank you so much for replying and helping build awareness with me.

Have fun . BEE xx

[TheHud]

Finger crossed Blearly that it's nothing bad, and that its treatable I think the neck is always a good place to look, I blame mine.

However, for some of us, they choose just to smile and say "Oh dear its a common problem dear, that can last for months for some and will often sort itself out." I have been there. My son is frequently there and gets the same fob off every time. He is currently there again and won't go to the GP this time because they will just say the same. They have given him propranolol and a variety of other medication and he is already on sertraline, another med they suggest. He has tried them all. It does indeed go, but not in the weeks or months that they say, it lasts for years and for some its permanent. As Bleary says it can be a sign, but you rarely get anyone really listening to what it could mean.

My general mind bending headaches have improved significantly with topiramate, but I gave up on finding out about the amorous causes ages ago, so cannot attest to those horrendous thundercrash barrels of no joy. Just not worth the ringing, blinding, exhausting, mind bending, blinding risk. My neck and dodgy BP can do that all by themselves lol

[Blearyeyed in reply to TheHud]

Yes ,

It is hilarious that the GCA headaches were of less interest than the 'Big O' one , so that why I wanted to write this post , not just for fun but to raise the fact that this is an important symptom and actually discussing spontaneous sexual activity related headaches with your GP and Rheumatologist will actually help them see the serious nature of your symptoms and speed up your checks and diagnosis.

Keep merry Merry xx.

[Longtimer]

Must say I have heard of this before, but can't remember much about it I'm afraid.....Good luck and keep us posted

[Blearyeyed in reply to Longtimer]

Thank you , now I know about it I am just glad to be ready to be able to raise it in a post and hope others will get confidence to talk about it with the doctors and hopefully improve their care , quality of life, and personal relationships.

Take care . Bee xx

[scats]

I see you're at it again my friend, accumulating conditions the rest of us would shy from. Your ability to find humour in even the darkest corners is truly a superpower. Lets hope that super brain of yours doesn't blow the scanner, someone else may need it.

All power to the PMR GCA Avengers and especially their mighty leader VENOM.

[Blearyeyed in reply to scats]

Thank you Scats

Perhaps my OH just has some strange Superpower in giving me a headache!

Perhaps the Doctors actually want to meet him and put him in the MRI instead to see what he has got that others haven't!

But , in all seriousness , in some ways I am glad it is me , because after years of checks and tests I have lost all ability to be made red faced by talking about even the most sensitive of subjects , so I was happy to write this post about myself .

Now others have seen it , even if they don't comment here , they have awareness of some of the more difficult to talk about aspects of their health are worth mentioning and can both change their lives and be changed for the better.

Take it away Firefly xx

[TheHud in reply to Blearyeyed]

Now its about time we also talked about Vulvodynia! I tried but got few takers

[Blearyeyed in reply to TheHud]

Yep , we will have to try again.

And thanks for replying and helping to build awareness with me on this delicate issue as well. xx

[Daisychain12 in reply to Blearyeyed]

Poor HUD xxx

[Blearyeyed in reply to TheHud]

Have you posted about it on HU?

I didn't get an alert about it , tell me the title I would love to have a read or let me know the site you wrote it on so I can look at the link.

That's why I hope people will give an emoji or interesting post reply on this issue , even if it doesn't affect them .

So that the post gets highlighted in the HU popular posts bar and there will be more chance for the issue to be seen by members that have these symptoms and build awareness that they are important to talk about.

Hope you are coping with your symptoms today and the GP and Hospital appointments bring you some answers and relief .

I will email you later . x

[TheHud in reply to Blearyeyed]

You know I can't even remember, however, it came up on here somewhere on someone else's post, I suspect. It was my first of many new DXs from my first visit to the BD centre. Someone else posted about the symptoms and I posted a link. It is on the BD list of associated conditions. Its neuropathic in nature and difficult to treat and live with. Here is the NHS link and if you scroll down you will see the link to BD and a few other known associates.

So for all us girlies who always found cycling agony, leaving us feeling bruised, battered and unable to sit straight, without a cushion for weeks, we were not just being whimps. Same goes for that, yes by gosh, smears are bloomin painful and they do leave you feeling like you got kicked in the nether regions by a donkey, its all true, you are not a fruit loop, it does exist

nhs.uk/conditions/vulvodynia/

Its come up before on HU

healthunlocked.com/behcetsu...

I think I have seen more but can't find them.

xx

[Blearyeyed in reply to TheHud]

Thanks , I bet there are alot of ladies in this group that will find the link helpful , wether that particular symptom is to do with PMR , Steroids or just adding to their mix of discomfort when the PMR / GCA pains make life bad enough anyway.

You are a wise Hobbit my Merry Friend x

[Daisychain12 in reply to TheHud]

Thank you so much xxx

[Daisychain12 in reply to TheHud]

Oh that’s a very unpleasant condition darling. Have you tried compounded cream with amytriptaline? After several weeks application I have seen miracles xxxx

[Daisychain12 in reply to TheHud]

Hope you see my reply xxx

[TheHud in reply to Daisychain12]

I have had it for 27 years, no idea what it was. I started with ulcers after a very bad emergency birth, its when my, existing inflammatory condition really got going, became more. My GP at the time said see how things settle, possible op in the future etc. to fix the damage. I never got sorted, life got in the way. I discovered steroids for ulcer flairs and various coping techniques inc ice packs, lidocaine etc. HRT helped some. It got much worse during a prolonged meno. Then post meno even worse. Gynae referrals did not understand about 6 years ago, so I gave up after a painful trans vag scan that showed nothing sinister and discharged myself. Did not have smears. Then only this year finally got a diagnosis. The big difference post DX is actually not using any cream or anything and only using a hospital wash called octenisan, inc every time you go to the loo, diluted spritzing. Big difference all round. No additives of any kind PH balanced etc. Of course there is nothing you can do about the neuropathic attacks or butt migraines as I call them. The saddle anesthesia is Ok when that happens, a bit weird but tingly and numb is better than crampy stab pain lol Its a very odd thing and women should talk about it more often because it affects many more at one time or another than we imagine in our silent musings, alone in our heads.

xxx

[Daisychain12 in reply to TheHud]

HUD darling it’s so unfair. Germaine Greer is despised and ridiculed yet she is spot on when it comes to the way society treats women. Our bodies are apparently public property when it comes to jokes but on serious stuff we are suppressed. So glad you got help xxxx

[Blearyeyed in reply to Daisychain12]

That's why as well as making a serious point I thought I would get a little light hearted payback on the worst of all the Male Doctor for us in my post , it's about time isn't it ?

[scats in reply to Blearyeyed]

You see, a true super hero, thinking of others. I do hope this helps some of our more retiscent members.

Hope the hospital visit went well and it's not left you too exhausted.

[Blearyeyed in reply to scats]

Ha, ha!

Not me for once , I was going to give support to a friend at their first session at Occupational Therapy. Complete with usual sunglasses and Dalek ChristmasT-shirt , people kept seeing me getting hugs from Trainers and sitting in a special chair brought for me to the waiting area , they kept looking and whispering with each other , as if they thought I was some sort of celebrity they didn't recognise.

Very funny.

So glad to give support to her but also to anyone who needs help on this site and thanks for replying and helping me do just that on this issue.

Hugs Bee x

[Pennythedug]

☠️😲😮😧

[Blearyeyed in reply to Pennythedug]

Thanks for showing your support for raising awareness on this issue. Bee x

[Yellowbluebell]

I have heard of this before probably when in the nhs but to honest when it doesn't happen to you or anyone you know you tend not to even give it a second thought.

It's very easy to blame this sort of headache on things like alcohol, migraines, stress, low sugar but if it happens regularly enough whilst enjoying yourself, you need to discuss it with someone. If you don't want to post on the public forum please message Blearyeyed direct for advice. YBx

[Blearyeyed in reply to Yellowbluebell]

Thanks YB !

Yes , I am genuinely happy to take messages from anyone who feels more comfortable asking questions on this in the private chat room .

As you say it is easy to blame something else , like migraines , alcohol or even medication or PMR for these headaches but they can actually be a sign of something serious or an extra sign that leads to arterial diseases or GCA or strokes , especially if you have noticed them happen often when you have had no alcohol.

It can happen to Men and Women , Old and Young , Healthy or those with other conditions , PMR or GCA . Thanks for helping me spread awareness .

I knew the PMR / GCA Avengers League would be up to helping spread the word on a worthy cause.

Bee x

[Daisychain12]

Bless your courage and sense for sharing this vital information. I will be passing it on. As a society we are fine with smutty jokes etc but genuine discussion is somehow awkward. We need your candour and sharing. Thank you. Xxxx

[Blearyeyed in reply to Daisychain12]

Thank you so much for joining in and showing your support on this as you say awkward but very important health issue.

I hope it comes in handy for everyone .

I don't care if the members of the site show my light hearted discussion of it to everyone they know , at coffee , at Men's and Women's Clubs , everywhere they can build awareness because it isn't just a PMR / GCA issue and can affect anyone at any age but it is never discussed publically so people don't realise these sorts of headaches , like persistent coughs with cancers , or blood in urine can be a red flag to a serious health issue.

In fact many GPs don't know either !

Up my Aussie Girl !

Bee x

[Daisychain12 in reply to Blearyeyed]

Bravo my courageous Bee!!!!!

[Blearyeyed in reply to Daisychain12]

It's the people on this site that have given me the courage DC.

Believed it or not , despite the deterioration in my condition , I haven't felt more capable of dealing with this illness and the diagnoses to come than I have since making friends with all of you.

Bee x

[Yellowbluebell in reply to Daisychain12]

I am open and frank about every thing ususlly but that doesn't mean that others have to be not does it mean they want to hear the details about about you and your problems. That then brings into question whether it is appropriate to disclose details if it could be helpful or even life saving for someone!! YBxx

[Blearyeyed in reply to Yellowbluebell]

I know it's a sticky thing to address , the great thing about this site is that there are lots of people like yourself that will put info up or join in on discussions on all sorts of subjects on other people's threads so it is there for others to read if they want to or avoid if they don't.

And even though most people wouldn't want to dispose on certain subjects , let's face it this subject is embarrassing , and I did squirm when I thought about writing it , and thought about not putting it up a number of times .

Then , I thought , what the heck , if there is just one other person trying to find out if they are normal by looking for information on HU on this subject but feeling to embarrassed to ask and I help them , I will put up with the red face.

Even though , when we all meet up for a split second I might blush at thought that a very weird image of me might pop up in your minds.

Though , with our usual zany conversations YB , the images on this subject would pale in comparison to some of the others in our madder threads!

xxx

[PMRCanada]

Oh BEE. Thank you, thank you, thank you.....for bringing this subject forward!! I am aware of it, and other conditions, from a career of working and studying/research in the sexuality field. Despite your comfort level, it takes courage and vulnerability to share on such a intimate level. Thank you for bringing forth your experience and humour surrounding your situation. I have supported many clients who have faced medical woes in relation to their sexual arousal/pleasure. Loss of some, or all, of our sexual pleasure is indeed a loss that needs to be acknowledged, explored and processed. Finding alternative forms of intimacy and connection can be helpful. From a medical standpoint, our sexuality it part of our overall health and wellness, and can provide important information about wider health issues.

In my very first post, and in my bio, I mention missing the sex I used to experience "pre PMR". Being a newbie to this forum, I considered leaving out that detail, but in the end I thought it important to mention. I thought, "Surely there must be others who are struggling with ripple effects of their chronic illness, including their sexuality." I was so pleased to receive a few private messages welcoming me, and thanking me for mentioning the "unmentionable". I've been passionate about the promotion of healthy messages and honest conversations about sexuality for a long time, but I understand and respect that not everyone is comfortable with such discussions, for a variety of reasons.

Although I have not experienced what you have Bee, I have indeed found my sexuality impacted by the fallout of having a chronic illness. How could it not? Start with 5 months of non-diagnosis and increasing pain, stiffness, and fear. Throw in pred and all it's side effects (next mood swing in 5 minutes, hair loss, redistribution of fat, to mention a few), fatigue, sweats, and depression. How on earth do folks even get to the desire stage of sexual response with all these barriers?? Not exactly conducive of hot, fulfilling sex. Here I was a newlywed, married just 2 months and PMR turned my world, including my sexual world, into a whirlwind of pain, confusion, and fear. It makes sense that people who experience chronic pain, don't want, or can't experience, pleasure or sexual activity.......what they want is to be pain free to in turn, enjoy that aspect of their lives.

Our relationships with our partners changes. How could it not? Mine did anyway. Watching me for months in increasing agony, without answers, caused my partner to see me a chronically ill person first and foremost, rather than the vivacious lover he had experienced the last 6 years. Roles changed from lovers to caregiver and sick person. Desires shut down in one or the other, or both as healing and other needs are prioritized. I'm worried about making off of the toilet, out of my car, or being able to shampoo my hair, and he watches and takes in the pain, unsteadiness, and the last thing he wants is to hurt me. But we need each other perhaps more now, than we have ever before, so we do our best to stay connected and support one another through it all. Adjustments were needed for us. I heard from single folks who worried that now they would not never be able to find/attract a partner given their health issues. How challenging it must be to go through this all with few supports or alone.

We've made it through the first year, somehow, some way, we did. Life is much better than those scary early months, and I feel a deeper connection with my partner having survived all that's been thrown my way, with his support, love and humour. We are able to adjust to the ongoing changes we face. That doesn't mean there weren't difficult times. Everyone handles their illness differently, outcomes vary, however I will say I have more compassion and patience since being diagnosed with PMR.

I'll be posting again soon about first anniversary with PMR which happens to be today. If it is ok with the forum, I'd like to include a bit about a (funny) incident that happened the night before the onset of my PMR symptoms (I promise not to be too graphic, but like Bee, it resulted in disclosure to a number of doctors in the coming months). Having a sense a humour about my situation has proven to be one of the most the most important aspects of my healing. Keep the funny stories coming folks!

If anyone has any questions or comments they are more comfortable sharing via a direct message, please feel free to do so.

Leslie

[Blearyeyed]

Thank you so much for your reply and both your personal and professional experience on these issues.

I have , like you , even before the headaches meant total abstinence from intimacy, been through the roller coaster and growing physical distance, and therefore, also emotional connection that can happen when both the pain and feeling of being unattractive collide with your partners wish not to hurt or upset you .

It can take its toll on a relationship , and I don't know how you have coped from the position of being virtual newly weds when your PMR hit and you should have been enjoying your honeymoon period not enduring trips to the GP.

You and your partner must be very strong and love each other very much.

In fact , for all of us, of both sexes , whose partners have stuck by us through the highs and lows , we must all be very lucky ( as well as being too hot to give up on! And not just in a hot flush way )

and I feel an incredible amount of admiration for the strength of those that unlike us have to cope with all this PMR / GCA stuff alone.

I will say that from experience , despite all the frustrations ( not just loss of sexual activity ) we have about our partners and they have with us because of chronic illness , honest communication and cuddles help to get you through.

I had to eventually let my husband know what I couldnt do but tell him that that didn't mean that I wanted him to sit ten feet from me either to stop him feeling he had to steer clear.

Keeping up telling each other you love each other , doing nice ( not necessarily romantic things ) for each other when you can , having a laugh and spending time together , and chatting in a way that reminds the OH you are still the rebel you always used to be and that works to keep your love alive.

In some ways , the need for abstinence , and the hurdles you have to help each other to cross to cope with this illness make you closer than ever , and love each other more.

It is in sickness or in health after all , there must be a reason , apart from poetic rythum that they put sickness first!

Of course , these sorts of headaches and PMR joint issues mean that some of us cannot partake in any form of arousal activity without significant pain , and for some the feeling of depression or unattractiveness is too much for them to feel like they can do anything .

And as I say , it is the same for the guys as well as the girls . In some ways it is worse for them , at least over the last 70 years women have got used to talking to friends or support groups on women's health issues , men still get less help on all these delicate issues than women and don't have the same relationships with their friends which mean they feel they can talk about delicate issues.

It's hard , but I know that words and kisses are worth far more than a few moments in the hay , and I know from talking to carers as much as the cared for that although our OHs often annoy us or seem unattracted to us , the majority of them think we are the strongest , bravest people around , they still find us as attractive as they did when we met them , and, love us all more not less for our ability to cope with our illness.

Hope you can share this advice over the pond with your groups , as it is an issue that really needs more press worldwide.

Love BEE x

[PMRpro Ambassador in reply to Blearyeyed]

I fear though that there are a lot of men who just switch off. OH had cancer 26 years ago that left problems for him which he ignored from his side - I couldn't ignore it, I'm not a masochist, but I did try. Then PMR came along and the overall pain level was simply not possible. I tried to expalin but, like many things, it had to be his way or not at all. And that is where it ended...

[PMRCanada in reply to PMRpro]

Agreed. I know of men, including my partner, who shut down their desires when their partners become ill (or when they get sick/injured). Once that happens, their partners will often stop initiating sexual activity altogether as well, not wanting to be rejected, or because they experience ongoing pain so it becomes easier to simply switch off and check out sexually. My OH is very sensitive and did not want to pressure me in any way, so he stuffed his sexual desires, did not initiate, despite open communication about our situation.

It is a challenge for sure, and the outcomes vary. I know that even I, with vast sexual knowledge and armed with everything from mindfulness techniques to an array of toys, and a desire to try, struggled to maintain sexual intimacy with myself and my partner. I try to make the best of “good days”, and we are both looking forward to my next knee injection that will provide pain relief and opportunity to reconnect sensually. It has been a big adjustment though, and I still mourn the loss of what was prior to PMR.

Thanks for sharing your experience with us.

[PMRpro Ambassador in reply to PMRCanada]

I can still remember the first night he didn't turn to put his arm around my shoulders as we went to sleep. Understandable because of pain due to the tumour but he didn't say why, just didn't do it for the first time since we married. It was like a slap in the face. No-one ever offered counselling about what it might mean in the future and then PMR turned up with its own set of challenges - which I tried to explain but all he heard was "Um, not..." and ignored the rest of the explanation. So many men appear to equate cuddles with sex, nothing in between. That has been the hardest thing to come to terms with I think...

[Suet3942 in reply to PMRpro]

Oh PMRpro that’s so sad. My husband is exactly the same. Early on in our marriage, if we cuddled, he wanted more. It has ruined the intimacy we could have had.

[PMRpro Ambassador in reply to Suet3942]

And how many more of us are there? Is it our generation do you think? Assumptions made that are questioned today?

[Blearyeyed in reply to PMRpro]

It's not just a generational thing , no matter how the younger generations have progressed in talking about what they want to do , we are still useless and awkward in talking about things we can't do.

We are all paralysed in beginning the subject and using the right words.

In some ways my daughters generation seem to be even worse than mine , they are regressing .

This is why there is so much miscommunication and feelings of being disrespected , and unloved , especially in the females of the 18 - 25 s , but the boys are often terrified too.

They are all becoming more bound up with feelings of low confidence and low self esteem in relationship issues because despite often living with the generation before , who had at least tried to start the dialogue ( except within awkward situations like these health ones ) they still don't talk even when they grew up with more open and respectful home environments.

The older generations didn't talk because it wasn't what you did , my generation don't talk because we don't know when it's best to start, and the youngest generation don't talk in case because they get it wrong and the whole world gets to find out about.

It is so sad that after all these years of revolution and liberty in relationships we still aren't any further one on one than we were before.

[PMRCanada in reply to PMRpro]

Some people take any signs of affection as a green light to proceed with sexual activity. And because couples may not talk openly about wants, desires, needs, boundaries, regarding their sexuality, they are left with making assumptions (which are really just guesses and conclusions that are often not accurate).

Sorry to hear of your situation. Sad and frustrating if it is “all or nothing”, especially when there are many ways to grow and express intimacy and sexual intimacy while adjusting to circumstances.

[PMRpro Ambassador in reply to PMRCanada]

Exactly my point

[Blearyeyed in reply to PMRpro]

Absolutely true , I must admit you do begin to dread the cuddle under the cover at first when the pain comes in because on a female side especially that often equates with a request for more , and the healthy partner must also dread the rebuff .

It makes you both feel unloved , unwanted and unattractive ( even though the sensible part of your head keeps trying to tell you it's not that , it is the pain ).

It's the feelings that the undiscussed Abstinence puts in your head that make you more emotionally distant and grow apart not the lack of physical contact itself.

And it's that distance if allowed to grow that can bring on the relationship troubles in the future if it isn't addressed , or spoken about with someone to prove that it is normal in all couples with a partner with Chronic Pain or Coronary issues.

They should really offer couples and family counselling as standard healthcare on lots of these issues with helpful advice and comfort that show you what you are going through is totally normal and with kind , sensitive pointers on keeping your relationship strong , loving and sex free in I'll health.

But I think it is along way to go with that , because even if they know this is going on , most Doctors , especially GPs , squirm when talking about that stress factor side of your health , like Teachers having to give Sex Education talks .

And some are probably shying away from doing these talks as standard also because they are concerned about making patients feeling uncomfortable about talking about doing things they are not used.

Much the same feelings as those that are happening at bedtime between the couples.

[Blearyeyed in reply to PMRCanada]

Yes , there is also the delicate issue that like with myself , if your head pain and bodily side effects from any sort of action in that Department means that no matter the skill or gadgetry you may have it cannot be used without the same Health issue happening your partner feels uncomfortable even taking up the offer of intimacy for their own enjoyment , as it is a one way street in their minds .

They don't want to make you feel more pain or more frustration by being giving to them.

Talking about how you both feel about things , and cuddles , kisses and quality time in each others company is the best way to get through those trying times.

[Blearyeyed in reply to PMRpro]

Yes , it is one of those issues that arrive with certain illnesses that Doctors don't really think about as important or possible on putting more strain on your health because for a time it can force you to make stressful adjustments in your relationship. And that's the same for Men and Women.

They are in a flap about me being in this way under 50 , because Doctors do seem to forget that in this day and age , with proper health care 50 us the new 40 , and without health issues many couples are continuing a happy sex life into the , 60's , 70's , and some into their 90's.

It is not just the younger patients that they should be concerned about when health problems mean changes in lifestyle issues or relationships , it's everyone of any age.

Thanks for sharing PMRpro. xx

[PMRpro Ambassador in reply to Blearyeyed]

I wasn't just thinking about age in that way. In replying to Suet I was thinking more of the assumption that in all such expectations are reasonable in marriage. Whereas now MeToo makes us question that???????

[Blearyeyed in reply to PMRpro]

Yep, we are all in the same boat no matter the age , too many assumptions and not enough chatter.

It's good to talk on here but it's good to talk at home too.

[Omanain]

😱😞😞

[Blearyeyed in reply to Omanain]

Thanks for showing your support . xx

[Slowdown]

Yes, I can relate to this and have experienced the thunderclap headache which puts the kaibosh on sexual pleasure. In my 60s, pre-PMR, I re-met a former lover and we had an intense relationship, headache-free, for several years, sadly he was diagnosed with oesophageal cancer and I cared for him over the next year - he was 18 years younger than me, my much-loved 'toy-boy', and his anger at the unfairness of it all was very difficult to deal with. After his death I was diagnosed with PMR. No partners since then, but sexual arousal always caused me that instant sickening headache so that is a long-gone pleasure. I initially blamed it on a neck injury caused by being forcibly ejected through a windscreen ending up on my head in the Namibian desert, but more inclined now to suspect cranial LVV .. or ? Time to follow it up, I think. Embarrassment isn't something I feel any more (sorry if the above information is TMI!)

[Blearyeyed in reply to Slowdown]

Not at all , and I am sorry you lost your toy boy.

As you say these sorts of headaches can come from previous neck injuries as many people with different types of autoinflammatory and autoimmune conditions had a trigger like an accident or traumatic event that was a trigger having a slow progression of rheumatoid related syndromes and diseases.

The instant headaches can be neurological or arterial in nature which is why they can be of concern and need checking if experienced regularly , and can add to the diagnosis of many artery related conditions like GCA , but also strokes and other forms of vasculitis or arteritis.

I think by sharing your experience you have been brave and helped to show people it's fine to be confident to talk about these more delicate areas of health , especially as most of us do not realise how issues with sexual health can be so closely related to neurological or circulatory diseases.

Thank you so much for sharing it's been a great help to me and helped others here too I am sure. xx

[Slowdown in reply to Blearyeyed]

Ha! I've just read another 'recent study' by UCL concluding that regular sexual activity into 60s and 70s boosts 'well-being' .. talk about the flipping obvious, except when it isn't...

Thank you for posting this, BE xx

[Blearyeyed in reply to Slowdown]

I think my Consultants are more alarmed a GCA diagnosis is unusual in my age group at a mere 48. The Gynae actually sat open mouthed and said , ' you can't give up sex at your age !!!!'

Like it was a deliberate choice (not) xxx

[Slowdown in reply to Blearyeyed]

Well, 'a pleasure delayed..' as they say; think of it as an extreme tantric sex strategy - eventually GCA will go into remission and then ... yowza ...

[Blearyeyed in reply to Slowdown]

Think the poor OH will die of shock !! xx

[PMRCanada in reply to Slowdown]

It (sexual activity) sure is good for us in a variety of ways physically and psychologically.

[Blearyeyed in reply to PMRCanada]

I only wish I physically could without a trip to A and E

( and seriously that has happened)

some of the pain and health issues do make it impossible for any of the sexual stuff , the big issue that happens with the Men I feel very much for them with is something I would never want to cope with and the issue that affects people like the HUD above is very similar because again no form of activity comes without pain and possibly causes no ability to continue on a physical level creating even more frustration.

[PMRCanada in reply to Slowdown]

Certainly not TMI. I’m glad you had the opportunity to enjoy a fulfilling sexual experience with your “toy boy” and you have those wonderful memories. Thanks for sharing!!

[ALeCount]

☺️

[Blearyeyed in reply to ALeCount]

Thanks for supporting the debate , alot more chat has gone on now on wider issues we all experience to do with this delicate area of health if it would be of interest to you or any help too.

Take care . bee x

[Suet3942]

Thank you Blearyeyed for bring this sensitive subject to light. I have had that problem occasionally. I did mention it to my gp a few years ago but she said it was “ nothing to worry about”. Please let us know the outcome.

[Blearyeyed in reply to Suet3942]

I definitely will and thanks for joining in on the debate and being brave enough to take part in this sensitive discussion.

I have actually added some more thoughts on the whole generation thing and emotional stuff , plus the need for more help in response to the replies from PMR pro above if you are interested in having a look.

I am just so overwhelmed by the response to my plea to members to keep this thread going so more people get chance to see it , become aware of the physical health issues and not feel alone in this.

All the people who have joined in and given replies or even just left an emoji reply have helped alot of people today , especially me . Thank you.

[nickm001]

Interesting discussion... and unfortunate problem. Have you got any answer from doctors about the cause of headaches? Could your headache be related to hormonal changes due to perhaps early menopause? Are the headache happening just before, during "O" or shortly after?

[Blearyeyed in reply to nickm001]

Thanks for answering ,

And a really good question because that was my first thought , and then I thought it may be have been something to do with the GCA which came up not long after but apparently these type of Big O headaches , if happening regularly and severe , are not hormonal in any way .

They are unusual and can happen to any sex at any age and can indicate a circulatory issue. Unfortunately , some people who have spoken to me privately had told the GP who said the same as you , and some doctors don't know the importance of these headaches.

But it sent the Gynae into a spin and in turn the Neurologist hence the brain scans and coronary tests.

Still waiting on those appointments , so I will just have to be a very well behaved girl until then , doctor's orders!!

Thanks again for answering

[karools16]

'encouraged to tell their doctors' I think not!!!!!!!!!!!!!!!!! Another hilarious post!!!!!!

[karools16]

Sorry Ididn't take your post, seriously.