@OnlyMe

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OnlyMe

Bladder Botox & Sex

Hi, I’m due to get Botox injected into my bladder as it’s overactive. I wondered if it has any effect on sexual function/sensation as the two areas are pretty close to each other! I look forward to hearing your experiences.

Stumbler

@Stumbler

@OnlyMe , it's not that close to be honest. But, when you regain faith in your bladder control, you can allow your brain to fully engage in the intimacy of the situation.

Eliot-S

@Eliot-S

Hi @OnlyMe I'm sorry I can't offer any answers, but a specialist MS nurse should be able to. My husband is allocated a specialist MS nurse who deals with sexual disfunction. I'm glad you raised the subject of sex though, as I've got a few related questions & wanted answers from people with direct experience rather than medical knowledge. I hadn't asked as I'd not seen mention of sex here & didn't want to breach any written/unwritten rules. I hope you find some answers very soon.

MattW

@MattW

Hi @Eliot-S. Ask away, you'll find the good people here are happy to help out wherever they can. I think the effects of ms make embarrassment about personal issues a thing of the past. From a personal perspective, I haven't had a good shag for over a year, despite trying every route I can think of and I [email protected]$/ing hate it. Life just seems empty without a good sex life! That's not to say everyone is the same though, this disease is so individual.

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OnlyMe

@OnlyMe

@Eliot-s you should ask away. To be honest it’s an area that’s changed for me as my disease has progressed and obviously important.

OnlyMe

@OnlyMe

Comment deleted.

OnlyMe

@OnlyMe

@MattW it’s tough. I’m married and as my disease has progressed, sex has changed too. Not to mention the effects some of the meds have which in my case have reduced senseation. I’ve had to reduce the pain drugs with help from my nurse to regain a somewhat decent sex life. I’m now wondering if Botox will affect me as it’s something that can be adjusted quickly like normals meds.

Stumbler

@Stumbler

@OnlyMe , Botox can't be adjusted. The effects will slowly wear off and need to be repeated after 6-9 months. The benefits of adopting the Botox treatment will hopefully be life-changing for you, as it was for me.

keld

@keld

I can give you advice about that as my urologist keeps on at me about having it and i do what i always do ignore it and suffer which is stupid but hi five to getting it done soon ☺ xxxx

Eliot-S

@Eliot-S

@MattW @OnlyMe My husband has tried sildefinil, tadalafil, vardenafil all with little effect. He takes gabapentin by the gram and this has a numbing effect, as does the fluoxetine he takes. I take fluoxetine too and know well its sensation-sapping/orgasm denying effects, but take bupropion to counter this (although I have no idea how this affects getting hard as I am female). I’m now sharing my bupropion with my husband (I am presribed more than I need, but don’t feel the need to tell my psych). He says it helps a little with sensation, but I’m hoping this will improve with time. It took 6 weeks to work for me. So many aspects of MS get in the way - practically and psychologically. My husband says he feels useless in so many respects, and feels it particularly keenly regarding sex (he truely is the world to me. He’s a fucking genius & the very opposte of useless despite all that SPMS has done to him; I keep telling him, but I’m not sure he believes it. We still have a strong sexual connection and an active ‘a-typical’ sex life as we have shared kinks, but I feel bad that I get more out of it than him. He is a very sexual person and still so horny in his mind, but is so depressed and frustrated as his body just doesn’t respond (even when he doesn’t take his pain meds before some pre-planned play-time). Does anyone have any experience of injections? Caverjet/Alprostadil? Any advice?

OnlyMe

@OnlyMe

@Eliot-S I 100% understand your husbands struggles, I had and have some of the same issues. I'll start with the the ED drugs, Tadalafil works for me but no so effective. I find sildenafil is more reliable and effective but I have to go through a bit of a ritual to make sure my bladder, bowels and legs have called down. This usually involves getting lots of rest, taking a small dose of baclofen (helps me loosen up and relax, and maybe even a nap before sex. it can still be hit and miss but I find having a bit of routine and predictability helps me a lot. Without the ED drugs I would be horny, want sex but be unable to do so physically. The mind wants it but the body is unable. I suppose the ED drugs help me feel connected to my body and in turn give me satisfaction that I can connect with my partner. Without ED drugs I would be horny, frustrated, a little angry at myself and feel inadequate. Its a low place and I've been there. What made it worse was the pain meds!!! I've tried Gabapentin which is great for pain but ruined my sex life. Viagra made me hard but I was unable to orgasm due to the lack of sensation. Discussed this with my nurse and decided I'd rather have pain than live without sex! I then discovered Amitriptyline, It has the same positive effect on pain but it leaves my system faster. So when I want sex/orgasm, I dont take the Amirtiptiline for 24 hours, its out of my body and then sex is pleasurable and I'm able to orgasm. I can go in more detail but maybe not so appropriate for a public forum, feel free to reach out in PM. About feeling useless, yeh I understand that. From being a big strong handy guy, I'm wobbly and barely able to walk. One side of my body is pretty weak so getting on top is pretty difficult as I cant support myself. How things have changed! Now when I was on top I had more control and could adjust according to what I needed, now I have much less control and all the pressure of us having a good time is on my partner. Although she's good about it, it can become a little passive for me because I dont want to hurt her feelings if something isnt right as thats can be a pain in the ass midflow. Slow progress is being made. Not being able to do a lot can sometimes me me feel useless. But I find other ways to participate and feel useful. Finding a purpose in different ways definitely helps. I really hope some of this helps, its been a real journey as no-one really tells you about the side effects being so pronounced but trial and error has got me here to a point where things just about work.

Eliot-S

@Eliot-S

Hey @OnlyMe Thank so much for you candid, illustrative, straight-talking & thorough response. PM would be great thanks, but right now I’m already here on this thread, want to refer to the points you raise (which I would forget without them in front of me) & don’t believe anything I’ve got to say is inappropriate or too graphic (I’m sure I’ll be corrected if I’m wrong). We’ve found the same thing with the ED drugs and pain meds. My husband was taking 1200mg of gabapentin at breakfast and lunch (2.4 grams!) and 200mg pregabalin at bed. He then dropped the pregabalin and tried skipping the gabapentin when we planned to have sex. The problem with this is that sometimes the preparation ritual takes so long that the pain is unbearable. Then, the results of the ED drugs can still be hit and miss...not helped by the recent inclusion of fluoxetine into his meds regimen. I’ve mentioned amitriptyline to him and it is an option. Unfortunately, due to the dosage and duration of his gabapentin regimen, whenever he’s tried reducing he goes into full scale ‘Trainspotting’ type withdrawal. Our next plan is to re-introduce the pregabalin, very slowly titrate down with the gabapentin and space it out more during the day. It seems so cruel as sex/play is the only thing that provides him with complete pain relief (which I find fascinating as an avenue for pain relief research. Investigating the roles played by dopamine, norepinephrine, serotonin, oxytocin, vasopressin, opiods etc., could enable harnessing of effects). Re: midflow. Yep, seeing, hearing, doing, saying the wrong thing at a critical moment generally means ‘game over’. Yep, trial and error, pretty much encapsulates things. One positive outcome is that we have rapidly become so much better and more relaxed about talking about bodies, bits, functions, needs, wants, thoughts etc. We still plan to trial injections. Our GP has agreed to prescribe, but my husband needs to be ‘trained in person’ to use the works. As you can imagine, the NHS is a little busy with other, more pressing jabs right now. Buying online seems like the best option. And, there’s a ‘How To’ video for everything on YouTube. Plus, a previous partner of mine used injections years ago for non-MS related ED (I’m arrogant enough not to believe I’m the common factor 🙂). All he did was read the paper instructions. I’ll post again if I have any updates re: injection effects. Thanks again!