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ThisIsNotMyIdeaOfAGoodTime

Fear of herpes destroying my life and relationship

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Hi all,

Am looking for help and support. I've struggled with severe OCD since my late teens (nearly 20 years!). I've got three main OCD obsessions, the most recent one being the fear of being infected with genital herpes. This latest fear started about 6 months ago, when I got a bout of thrush about 10 days after being intimate with my new partner. We'd both been for tests to make sure we were free of all STD's but, as I found out, in the UK herpes is not routinely tested for unless you have symptoms.

My partner has promised me that he has never had any herpes symptoms, but I read that it could be so mild or even asymptomatic for some people that they don't know they have it. 

I've had flare ups of what could be thrush (came back positive for thrush and negative for herpes the first time with a swab at the sexual health clinic), the second flare up about six weeks later, I went back to the clinic and the doctor told me it wasn't herpes from a visual exam but no swabs. She said she'd seen many cases of GH, and visually I didn't have any signs.

Third flare up, I went to my GP, who said she was 100% sure that it was thrush based on visual exam, but the test came back negative - which could have been due to using a pessary 2 days earlier, therefore invalidating the test. She gave me more pessaries and it cleared up.

I've been back to the clinic last week with what could be an in-grown hair and am awaiting swab results. Today, I'm starting to have another outbreak of whatever and am freaking out.

I'm spending hours obsessively examining myself for any signs of blisters, and have been since the first outbreak. Im terrified and constantly shaking and crying. It could just be recurrent thrush, but the symptoms are similar to GH, except I've not yet seen any blisters, although I've been reading all the websites and they say that sometimes blisters cant be seen or are mistaken for other things.

Ive never had thrush before like this, and certainly not every six weeks or so. I'm so scared that it is GH. I know that it's just a skin disorder and not life-threatening but it's so stigmatized and the thought of having these outbreaks all the time for the rest of my life is making me suicidal.

It's the idea of having a virus inside me that i can't control, and the fear of being rejected and alone, not to mention it being painful. I have severe ocd about hiv as well, so this is my first proper relationship in a few years. Luckily, my partner is very understanding and has himself had and recovered from OCD so he gets my anxiety and fear. He even had 2 hiv tests done to reassure me, and is as supportive as he can be without indulging my ocd.

But I'm wrecking our relationship as I'm obsessed with GH. I'm really depressed and anxious, especially when I get a flare up of whatever this is and spend hours examining myself and googling symptoms.

The doctors and nurses in the clinic are patient with me and try to calm me down as I'm having panic attacks when they're examining me and asking over and over again for reassurance that it's not GH. I just don't believe them when they tell me it's not, especially when I get another flare up. It's so painful and sore and horrible physically - I'm terrified that I'm going to be going through this for the rest of my life. I feel dirty and unloveable.

The constant panic is triggering off my other ocds so am plagued by all my obsessive thoughts all the time. My life is hell. I can't stop thinking of killing myself and am a misery to be around. There's only so much my poor partner can put up with. I'm terrified he's going to leave me and I'll be on my own again. 

I'm under CMHT care, but they're no help at all so I have no professional help. The crisis team have been called recently re possible hospitalization but there were drug users in the MH unit, so the team thought their talking of IV drugs would trigger me more than help me. So I'm on my own. I did have a therapist privately, but they told me they couldn't help me whilst i was in crisis and suicidal, and referred me back to my useless CMHT. 

So I have my amazing parents and partner, but no professional support and I'm putting us all through hell. I can't take any more of the ocd - I've been in therapy for years doing cbt and erp but it doesn't work for my fear of hiv or gh. 

Is/has anyone else been through this? Any help and advice would be fearfully received. I'm terrified and really at the end - I've had this ocd hell for nearly 2 decades and it's destroyed my life. I can't take anymore!!

Sorry for the long post!

 

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Hi, ThisIsNotMyIdeaOfAGoodTime and welcome to the forum :)

Im really sorry to hear you are finding things so hard at the moment. I don’t want to give you any reassurance because this will make things worse in the long run. But I can offer a little advice regarding your problem that you might find helpful. 

This will probably be a bit to much information? But when you are sexually active again after a long period without doing so, this can cause thrush. Also regular shaving can cause these symptoms too. 

When I had several courses of antibiotics I suffered with severe thrush and it wasn’t pleasant. After this it kept returning every few months or so and nothing seemed to clear it up totally. However on my last visit a kind lady there told me what had helped her, drinking one Yakult a day to replace good bacteria into your gut, or a couple of spoons of natural live yogurt with muesli daily. Stop shaving and just trim short, washing clothing in a non bio wash powder and only using unperfumed dove soap in the shower, but only wash lightly once a day, because excessive washing will make things worse because you remove all your own natural body defences. 

Hope this will also help you with your ongoing problem, as it did with me :)

Your OCD will be more severe at the moment because you are getting triggered because of the thrush and your fearing the worse, unfortunately this is the OCD at play here, remember OCD is all lies. Each time you get a thought, refocus your attention away onto a beneficial distraction and do this each and every time. Trust in your health workers and see it for what it is and nothing more. 

CBT is the best treatment for OCD, so I would consider trying another therapist because after two years of treatment there should be some signs of improvement. Maybe it’s worth a try. 

Best wishes, lost :)

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Your statement that CBT doesn't work for your OCD theme is simply not true. Perhaps you were not taught properly. Perhaps you didn't do the work necessary. I can say eith all cinfudence that CBT works for all themes.

Your post above is riddled with examples of compulsions you do. Getting tested. Your partner getting tested. Constantly scanning for lesions. The list goes on.

Compulsions are the fuel that drives the OCD engine. They cause more doubt to surface and more intrusuve thoughts to appear.

You cannot recover from OCD while continuing to do compulsions.

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Hi OP – sorry you're going through this. My OCD was concentrated on variations of this theme for many years. CBT, if done properly, DOES work for this theme.

Every time you go to the doctor, examine yourself, asked your partner to get tested, read up on the disease, you're performing a compulsion. CBT will teach you how tolerate the anxiety and fear, accept its existence, but not do ANYTHING about it. No doctors, no reading, no examining. These things are making things progressively worse. You learn to say: "Yes, I may have herpes and my life is over," don't do anything about it, and gradually build up tolerance to the thought so eventually it doesn't really bother you at all.

One thing you have realize here, at the outset of treatment: your current problem is OCD. This is the condition that needs attention right now. No one here can tell you whether or not you have genital herpes; a doctor will likely never come up with test results that you trust; and there will never be a definitive answer that your OCD will accept.

Don't let OCD fool you into thinking genital herpes is the problem. Your OCD is lying to you. OCD is the problem.

 

 

 

Edited by ohwhyhello

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I just re-read my post - fearfully received should read gratefully received!!

Thank you so much for replying. I'm really grateful - yet also fearful! ?

Lost - thank you for the practical recommendations. I've been using aqueous cream to wash down below but that hasn't stopped the flare ups, so I'll try what you've suggested, thank you.

Polar and Hello - thank you for your responses. I'm glad to hear that cbt has worked for you, esp re fear of infectious diseases. I've been in therapy for my hiv fear since 2010. Before that, when my ocd first kicked off back in the late 90s with harming fears, it took nearly 3 years but ERP did work considerably enough for me to be able to lead a normal-ish life, go to uni etc. I couldn't leave the house on my own for two years as the ocd was so severe before intensive and then ongoing erp.

But the infectious diseases ocd is so much more difficult to deal with than the harm ocd. I've unnecessarily been on month-long courses of post-exposure prophylaxis for hiv on three different occasions, then hospitalised for a breakdown for 3 months followed by a 3 week in-patient ocd programme (this wasn't in the uk; I was working abroad so had private health insurance as per my visa requirements). Erp/cbt has just not been effective on a mental level - physically, I can stop myself from checking the ground for blood/needles/body fluids when I'm not really anxious, but I can't have physical relationships without definitive testing for hiv.

Needless to say, dating has been "interesting". Most guys have walked away as i refused to be intimate with them before testing. It's been hurtful and scares me that this is the future should my partner and I split up. We've only been together for 7 months, and although it's serious, there's no guarantees - as with anything in life - that it will last.

I just cant bear the thought that this is GH, especially as I'm having painful flare ups every six weeks or so. Like I said, it's ultimately driven by the fear of rejection. I could try to not do the compulsions, but the psychological repercussions of having herpes or hiv are just something that i can't live with. I'm self harming and just can't take anymore. I'm exhausted of living with OCD. I just want this hell to end. 

Thank you for your kindness and your support. I really appreciate it xx

 

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Do you think the constant testing and checking and worrying and researching is helping in some way? You said it's been many years of this. None of the checking and doctors have helped the situation, it seems. Maybe it's time to re-evaluate with a new therapist? You can't keep doing the same thing and expect different results. You are capable of much more than you give yourself credit for. I've been where you are. Many tests, symptom checking, it was miserable. CBT teaches you how to deal with anxiety in a healthy way. I can now say to myself, "Oh, maybe I have HIV" and it doesn't bug me one bit. I don't feel compelled to get a test. If I can do it, you can too!

Edited by ohwhyhello

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54 minutes ago, ThisIsNotMyIdeaOfAGoodTime said:

Like I said, it's ultimately driven by the fear of rejection. I could try to not do the compulsions, but the psychological repercussions of having herpes or hiv are just something that i can't live with.

Just to add: what about the psychological repercussions of OCD? This is the problem at hand. People without OCD get STD scares, and STDs, all the time, and deal with it as it comes, however hard it may be. Just like a skin condition doesn't need to dictate the course of your life, neither does OCD. Don't let it.

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You day you can't live with having herpes or HIV but what about your life right now? You do endless compulsions and what is the result of that? Constant anxiety, massive doubt, self harming, always on edge, relationship problems. The list goes on. What kind of life is that? 

Can you admit that what you've been doing isn't working for you?

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Hi guys,

Thanks so much for your responses. You're both right - it's no life that I'm leading. I'm going to get a new therapist and re-start erp. I'm so glad that you've successfully conquered similar anxieties - it gives me hope for the future.

Thank you for all your support and rationality. I really appreciate it, and know that you're right in what you say.

I wish you health and happiness xx

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Argh!! Had another major trigger!! My partner has just shown me a large-ish red patch he has down below (from his thigh fold to his testicles) which could be thrush/jock itch/chafing, but which I've now convinced myself is GH.

He won't go to the GP or pharmacist - he wants to relax on his day off, but it would be ten minutes out of his day to allay my fears! He says it's nothing to worry about, but he's not medically trained. I'm terrified and we've just had an argument over it.

I don't think I'm well enough to be in a relationship and I'm destroying this one. I'm so scared and angry at him for putting me through this by not getting it checked out. What should i do? Please help!! Thanks x

Edited by ThisIsNotMyIdeaOfAGoodTime
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Hi ThisIsNotMyIdeaOfAGoodTime,   (totally agree with your username by the way! :( )

I'm sorry to hear you are struggling so much at the moment.  OCD is just torture when it really gets its claws in.

Where you say this:

4 minutes ago, ThisIsNotMyIdeaOfAGoodTime said:

it would be ten minutes out of his day to allay my fears! 

I'm not sure where you are in your understanding of OCD right now, but it's a horrible truth to accept that compulsions can never allay our fears, or at least only temporarily :( 

It feels to you - in the grips of OCD - that if your partner would just get this checked out it would calm your fears.  But really this would reinforce the OCD cycle, making your fears much worse in the long run.  What you are doing is reassurance seeking, one of the most common compulsions.  

You can find a way out of this horrible place you're in at the moment but it will involve going against what your brain is screaming at you to do.  So in this example, you would accept your fear, embrace it, and do nothing to try and alleviate it. Doing this repeatedly eventually teaches your brain that there is nothing to fear.  That is the way out of OCD.

Have you read any good books on OCD? Are you in therapy? (Sorry if you've already explained this I've not read all of your thread).

GBG x

 

 

 

 

 

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Hi GBG,

Thanks so much for your reply. I'm not in therapy atm - I was, but my therapist 'broke up' with me when I went into crisis and became suicidal. He referred me back to my useless CMHT who've been no help, so I have no professional support atm. That was about 2 months ago, and the ocd is getting worse and worse, as are my suicidal ideations.

I'm also currently switching meds, from seroxat to escatilopram, so the seroxat withdrawal has been horrendous and the past couple of months absolute hell.

I know what you're saying about not indulging my compulsions as that's what the ocd wants, but I'm not strong enough to resist them atm. I've been signed off work sick for the past fortnight due to the effects of the seroxat withdrawal as i can't function atm. I'm due back on Monday and can't deal with that in addition to this new fear triggered by the rash.

ATM, I can't engage in cbt/erp rationally. I'm in constant crisis mode. How do I move past this crisis phase into one in which I can engage with therapy?

I have a number of ocd and cbt self-help books. I know from previous therapy what I'm meant to do, but I just can't do it atm. It all feels so hopeless. I can't take anymore and there's no professional help available for me atm (I dont know where youre from, but in the UK, the nhs mental health services are dire - overstretched and underfunded. It's a nightmare.)

Thank you for your advice and support. I really appreciate it xx

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I totally feel your pain and it is just horrible.  

It can feel very much like a vicious circle when you are stuck in panic mode, and you don't feel well enough to fight the OCD, but the OCD is making you feel worse, and it becomes a self-perpetuating cycle.

I think it's very important when you're in this mode to just take a moment to breathe, slow everything down as much as you can, and be very gentle and kind with yourself.

And then when you've done this, think... what tiny tiny step could I take, in this moment, even though everything feels so awful? It could be something as simple as waiting five minutes before doing a compulsion, or two minutes, or thirty seconds.  Just practising a very short delay can be enough to feel like to are clawing back a tiny bit of control from OCD.  And then next time - wait slightly longer.  And so on. 

It is sometimes easy to fall into the trap of thinking "I will confront my OCD when I feel a bit better, I am in crisis mode at the moment and I can't face it".  But even when in the midsts of feeling truly awful, you can do something, even if something small.  Sometimes feeling better has to come later, although I know that is difficult to entertain.

I really hope you start to feel better very soon.  It is really awful when you are in the grips of OCD.

Take care xx

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1 hour ago, ThisIsNotMyIdeaOfAGoodTime said:

He won't go to the GP or pharmacist - he wants to relax on his day off, but it would be ten minutes out of his day to allay my fears! He says it's nothing to worry about, but he's not medically trained. I'm terrified and we've just had an argument over it.

 

Would it allay your fears? Would you trust the test results? Or would you have him go back again at some point just to be sure?

This is where you need to draw the line: involving others in performing compulsions. This is not fair at all to him and borders on emotional abuse.

I KNOW you mean well, and that you're suffering, it's awful being in the throes of OCD, but you need to draw the line.

I'm not sure if the forum frowns on this, so please delete if need be, but I've been going through some really bad personal issues, and being more of a writer than a talker, I've found online therapy at Talk Space incredibly helpful, you sign up and can literally be talking with a CBT-trained therapist in the States within hours, you get one email exchange a day, you get to pick your own therapist and can switch therapists at the click of a button if you're not jibing with him/her. It's no replacement for in-person one-on-one therapy, that's for sure, but on short order, in a crisis, it's a pretty cheap and potentially useful tool in helping to devise an "attack plan" for treatment going forward.

You keep saying "I can't". The more you say it, the more you believe it. It's a bad cycle of negativity. You sound like a smart, introspective person with a good heart. Why wouldn't you be able to tackle this? You ARE capable! I'm on Team ThisIsNotMyIdeaOfAGoodTime!

Edit: If anyone has any questions about my experience with text-based therapy – ask away. I can't laud my experience enough, so far.

Edited by ohwhyhello

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10 minutes ago, ohwhyhello said:

Would it allay your fears? Would you trust the test results? Or would you have him go back again at some point just to be sure?

This is where you need to draw the line: involving others in performing compulsions. This is not fair at all to him and borders on emotional abuse.

I KNOW you mean well, and that you're suffering, it's awful being in the throes of OCD, but you need to draw the line.

I'm not sure if the forum frowns on this, so please delete if need be, but I've been going through some really bad personal issues, and being more of a writer than a talker, I've found online therapy at Talk Space incredibly helpful, you sign up and can literally be talking with a CBT-trained therapist in the States within hours, you get one email exchange a day, get to pick your own therapist. It's no solution for real one-on-one therapy, that's for sure, but on short order, in a crisis, it's a pretty cheap and potentially useful tool in helping to devise an "attack plan" for treatment going forward.

You keep saying "I can't". The more you say it, the more you believe it. It's a bad cycle of negativity. You sound like a smart, introspective person with a good heart. Why wouldn't you be able to tackle this? You ARE capable! I'm on Team ThisIsNotMyIdeaOfAGoodTime!

:goodpost:

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Thank you to both of you for your kind and thoughtful responses.

I'm trying my best to not engage with my compulsions - I am desperately trying not to hold him down and inspect the red patch with a magnifying glass for the next hour!! ? Seriously though, you're right that it borders on emotional abuse. I hadn't thought of it in that way. Ocd can be a very selfish disorder. 

I'm going to try and do some distraction techniques and get a new therapist. I really need to get this sorted.

Thank you so much. Hugs xx

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I know you say you can't resist compulsions because you are in crisis but doing compulsions will keep you in crisis. The way forward is to resist compulsions. Stand up to them.

Originally you decided that you couldn't live with a disease, that it would be the most devastating thing possible. That was disordered thinking and not true. Lots of people live lives while having those diseases. You could do. But then you started to fear having those diseases and the fear overtook all. Now the fear is running the show. And you make it so much worse by feeding the fear with compulsions.

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Thank you, polar. It is disordered thinking and I know that millions of people live happy, normal lives with herpes and/or hiv, especially here in the West with access to meds.

So why am I still so scared of them? Why do I equate contracting one or both with having to kill myself should i do so? I've researched both thoroughly, and they're manageable albeit chronic conditions, much like diabetes - I have no fear of contracting diabetes, even though it can lead to horrendous physical complications - blindness, limb amputation etc.

It has to be the stigma, the fear of being rejected and alone and unloveable, of having a virus in my body that i can't control. Yet, I contracted genital warts from a previous partner when I was 20, and I remember being distressed about it at the time, but it cleared up with meds and I never had another outbreak. What is it about herpes that's so different?? Why am I so fixated on it?

I've had another awful time of it yesterday. My partner's rash plus my own thrush/whatever symptoms triggered me so much that I got into a real state and couldn't cope with the ocd, so stupidly i tried to hang myself. Obviously, I failed, but i was feeling so desperate and as I've said, there is no professional help available to me.

It was a cry for help out of desperation, but my partner and parents were devastated when I told them. My partner now doesn't know if he can cope with me anymore and I'm terrified that he's going to leave me.

He's put up with so much with my ocd and meds withdrawal over the past few months, but he's emotionally exhausted and this was the final straw. 

I'm so angry with myself for hurting them. I didn't know what i was doing, I just felt so desperate. My parents are getting me a new therapist for next week, but it's no quick fix.

Any advice for crisis situations when the ocd and suicidal ideations get too much?

Thanks xx

 

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3 hours ago, ThisIsNotMyIdeaOfAGoodTime said:

I've had another awful time of it yesterday. My partner's rash plus my own thrush/whatever symptoms triggered me so much that I got into a real state and couldn't cope with the ocd, so stupidly i tried to hang myself. Obviously, I failed, but i was feeling so desperate and as I've said, there is no professional help available to me.

 

This is not "stupid", this is serious. I'm afraid I can't offer much in the way of practical help, as I don't know much about the system in Australia, but you have reached a point where your life is in danger: if you don't feel comfortable walking into an emergency room, call you GP, knock down his/her door until you can speak with him/her and indicate that you require immediate help. Call a suicide prevention hotline and ask what they suggest you to do right now.

Edited by ohwhyhello

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Hi ohwhyhello, thanks for your message. I'm not in Australia anymore, I was living out there when I signed up but came back to the UK after I had a breakdown due to my ocd out there. I miss my private medical insurance though - I had access to excellent private psychiatric care through them. MH services in the NHS are appalling in comparison - I've had next to no help.

I told a cpn in my cmht a couple of weeks ago that i wanted to and was going to kill myself. He just said 'Ok', shrugged and walked away. That's the second time he's said that, I had another crisis in December last year and he said the same thing. Absolutely disgusting way to treat mentally ill people in crisis. 

I was assessed about 10 days ago by the crisis team. They wouldn't hospitalise me as there were IV drug users in the mh unit so that would trigger my hiv ocd too much. There was no other support they could offer me. I have been left on my own. The cmht hardly ever respond to phone calls, they don't get back to you then the duty worker is a social worker not a psych nurse so can't help. My GP just refers me back to my cmht when I go to him in crisis. I've been to A&E, waited 4 hours to be given 5mg of diazepam and told to call the cmht in the morning. 

It's a shambles - there's no help. I'm lucky that I've got such a supportive family - but once my parents pass, I'm on my own!! I'm terrified by that prospect.

My parents are going to help me with the costs for a private therapist. So I need to find a good one with expertise in ocd and erp. There is hope, but I'm scared- I know how hard erp is and I'm worried that I'm not strong enough.

This forum is a lifeline!! Thank you to everyone who has replied to my posts and for all your support. I am really grateful xx 

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Hi GBG,

Sorry I missed your message. Hope that you're well.

I'm not doing too well, tbh. I've booked an appointment with a therapist who specialises in OCD for next week. Hopefully the CBT/ERP will begin to work.

I went to another clinic yesterday. Same old same old. They couldn't see anything, told me to come back if/when I have another outbreak. I'm living in constant fear of the next outbreak of whatever it is. Am very depressed.

Went back to work yesterday. It's only a little boring temp job as my last OCD breakdown 2 years ago destroyed the career I'd worked for over 10 years to achieve. So I have no career, no proper job, no family of my own as i can't have kids due to the fear of ocd being hereditary or the ocd thoughts changing to being about harming them. Things are still rocky with my partner and he's very down atm.

I feel like life is pointless, tbh. I'm sick of the hell that is ocd and depression and am terrified of starting therapy again. My family don't understand what it's like having ocd, despite my having had it for nearly 2 decades. I feel very alone and lonely.

Thanks for listening xx 

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