Suicidal Thoughts while going through HS

Hi,

We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologise for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help. 

If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen. 

Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need. 

If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help. 

If you are based outside of the UK. 

The Samaritans is a UK based charity, but they also have suggestions for how you can access help in other countries.

Please have a look at this page https://www.befrienders.org/directory

Hi Symone: 

This is a difficult disease that we have to deal with.  I’m so sorry you’re feeling that way.  You may want to try another dermatologist and get some counseling as well. I’m going to seek counseling myself because it’s becoming overwhelming and I’m an overgrown adult. I’m laying in bed now, trying to muster up the strength to go to my friends house for a small birthday gathering.  My pain now is mostly when I move, so I don’t want to move. 😩.. I totally get where you’re coming from, but we have to forge ahead,  try new medications and get the help we need to deal with this disease. You may want to read some of the other discussions on surgery and other treatments. I encourage you to stay strong, even when you think you cannot.  

I feel the same way as u do I have stage 3 and always in pain nuttin works. No antibiotics work eather I won't have the surgury. I have changed alot too and. Always in pain

Symone

I dont know where you are in the world, but it seems you are not being offered the many alternative treatments available for us in the UK.

Sounds as though you have been refused Immunosuppressive treatments (Infliximab and adalimumab). I dont why you have, the only reason you are refused in the NHS service is either another medical condition or funding issues.

I dont no if this site allows links in our posts but there is The Hidradentitis Suppurativa Trust

http://www.hstrust.org/

You could contact them for advice and even if you aren't in the place they would advise you where tho get more information from.

If you are in the UK there is a section on the NHS that give more information on treatments

[url=www.nhs.uk/conditions/hidradenitis-suppurativa/#treating-hidradenitis-suppurativa]www.nhs.uk/conditions/hidradenitis-suppurativa/#treating-hidradenitis-suppurativa[/url]

Hang in there as there is more than one treatment out there as the same treatment doesn't suite all, as My wife has HS and some work and some dont but so far she has her HS under control with Steroids, Antibiotics and using a surgical scrub to wash with rather than soap.  

Hi please hang in there! Seek therapy please. I know this disease is terrible to our body image and self esteem. Please seek the treatment of an Endocrinologist. They will check your hormones. Ask to be EXTENSIVELY tested for Cushing's Syndrome. I believe this brought on my H.S. I believe the cause is from topical steroid cream (betamethasone) I'd been using for 20 years for eczema. Steroids in any form can cause this. As a preadolescent kid I received allergy shots. Within two years by aged 10 I was obese! My period came pretty late compared to other girls. I became hairy. My voice has gotten deeper and deeper. FYI initial testing has not detected under active thyroid(Cushing's), so I INSISTED on more tests from my Endocrinologist and I'm in that process right now. So I know frustration. A lot of doctors are clueless to H.S. Don't allow them to tell you you're wrong. You know your body! The Endocrinologist may be able to help you get the Humira. In the mean time, PLEASE TRY BLACK SEED OIL. It comes in pill form if you can't stand the taste. I drink Kiva brand. Its available on Amazon for $20. That's a month's supply. I find it tastes the best. It took it and the eczema on my hands away in a day and a half! The boils have pretty much disappeared! Take a tablespoon once or twice a day with food. Black seed oil is available at any vitamin or health food store. Stay strong and know you're not alone.

Hi symone79, 

I do not have HS but my wife does - actually did. She's 38 and has been battling with it her whole life...through high school, college, and adulthood. We just recently went through surgery last summer and as rough as it was, it was life-changing. She felt the same way as you as if there is no one to turn to and understand what she's actually experiencing. She also lost both her parents when in college making matters worse so she literally had no one to turn to. Through her I truly understand how tough this is on everyone dealing with it, moreover the fact that it's an embarrassing issue to explain to someone who has no idea what HS actually is and how it impacts your day to day. 

All I can offer is that there is hope and surgery is not a terrible option. For us (knock on wood) it's been the greatest blessing of our lives. I'm happy to recommend the Dr we saw but he is out in California fyi. 

Hello Symone! My name is Nicole. I read your post about your battle with HS. You are NOT alone. It may feel like it but you are far from it. I have HS as well, I'm 30 now. I've had HS now for 4 plus years. I have not come to stage 3 but I've had my fair share of pain from it. I am terribly sorry that you're in terrible pain. HS is a very unforgiving disease no question. You cannot let it beat you. You are so much stronger than you think. Your life is so much more important than this disease. You are an HS warrior. I'm sure you're thinking that pain and suffering is no way to live, I understand that but your life is too precious to just give up. You have family and friends who love you. Your life is only beginning. You must fight against this. It may feel like it's impossible, but it's not. There's a lot more people standing behind you, other HS warriors, than you know. You may not see us but we're there, fighting along with you. Side by side. Friends and family may not completely understand because they may or may not be going through the same thing you are but you should talk to them about it, get the distress off your chest. You may find you may talk about it a lot but it's part of what gets you through it. Your friends and family would love to hear you tell them all your hurts than never able to hear them at all and lose one of the most important and cherished people in their lives, you. I talk about mine a lot. It does help. I will tell you also that to help me through the disease also is that I take 4 Turmeric everyday which helps with the inflammation caused by the HS. It works for me. It doesn't make it disappear but it keeps the inflammation away which then means less pain, a total bearable pain. I've also looked up information on what and all foods, seasonings, everything that is what I call HS irritants and stay away from them. Over time I have found what does and doesn't bother my HS in my diet and not everything bothers mine but what does I try to stay away from even if I don't like it. There are some HS irritating foods that I can eat in moderation without sending it overboard. After a while you tend to just learn to live with it like me, sometimes you don't even know that you're doing it it just comes naturally. Your life means so much more than this ridiculous, stupid, dumb disease. You matter. HS doesn't. You need to make a stand for yourself and tell yourself I'm not gonna let my HS beat me. You are and will never be alone! I wish you all the best. Stay strong, because remember, you ARE an HS warrior. You are in my thoughts...

I take 4 Turmeric liquid v cap supplements a day, 2 in the morning and 2 at night. Sorry, I didn't exactly specify that. I went to a store called The Hebal Path and I get my Turmeric supplement there. It's gluten free, 100% vegetarian, no artificial flavors or colors. It's NEWCHAPTER non-gmo verified formula Turmeric Force. People also put turmeric in their food and it can be melted in a hot drink of some sort because it comes in powder form too like the turmeric seasoning you can get at a grocery store. I learned about taking/trying Turmeric from other people on this forum who use it. I'm glad I did too. Not always the cheapest but it works. I've been taking it for at least 4 years.

i feel you man , i get them near my testicles , last time i had one the size of a ping pong ball , went to surgery , it was so painful couldn't even scream , now i got another one almost at the same spot , i can even walk normal