PCOS & Hidradenitis Suppurtiva

rozmister

Hi,

I was wondering if anyone on here has Hidradenitis Suppurtiva and Polycystic Ovaries Syndrome?

I've had HS since I was 10 but it has taken me until now (14 years) to receive a diagnosis. I don't get it really badly, I just got abcesses about the size of maltesers in my thighs and groin which really hurt and are bright red. I've tried hibi scrub (makes my skin peel), antibiotics (work for a while but when I come off they come back), cutting refined sugar out of my diet (didn't help in itself but an unhealthy weekend makes it worse so diet is important), acne cream (no change) and now I generally take antibiotics if I get a really bad one and lance them myself.

When they diagnosed it they told me they think I have PCOS because my HS started when I begun puberty. I've been referred for an ovary ultrasound and am waiting for the letter to come through the post to tell me when to go. I'm quite scared because I'm not sure if I want to know (as I could have fertility problems if I have) but I will be going in the hope that if it is PCOS they can prescribe hormones to help with that and in the process help my HS. I've been recommended to try and lose some weight for my HS too and am on Slimming World (7lbs down so far).

I guess what I'm looking for, and I know it's a long shot, is somebody whose been where I am who can tell me about their experiences. Has anyone on here had this combination? Does anyone with HS have any tips for managing it? Online it says there are three stages, I am stage two will I definitely get worse?

I feel a bit down about it all. I'm 24, overweight, have hideous scarring and abcesses on my thighs and groin that make me feel uncomfortable about being intimate with men (not that there's any interested) and am having to face up to my fertility (or potential lack of). I thought being young was meant to be fun and carefree?!?!

rozmister

orlao wrote: »

I have had HS - it's hell isn't it? I think I only got to stage 1 but I never got any medical treatment for it. What worked for me (this isn't medical advice btw) was aloe vera gel, the 99.9% pure ones.

At one point I was slathering it on 4 times a day and it stopped the 'abscesses' getting any bigger and then they would gradually disappear. Over about 2 years the scarring has gone and I haven't had more than a tiny spot in that area for about a year but I still use the aloe vera daily. Worth a go maybe? Certainly won't do any harm!

It's hell and it's so embarrassing! Where do you get your aloe vera gel from please, like is it from a health food shop? I'll definitely try it because I've got nothing to lose and it could help!

MSE_ForumTeam1

Can I make a gentle reminder to no post medical advise/suggestions on treatment.

Kind Regards

rozmister

MSE Forum Team - I understand that medical treatments when I have a prescribed course of action would be foolish but my GP himself admits no one knows what will cure me and I have tried every possible medical solution suggested to me so far with no solution. I'm now on a course of antibiotics when I flare up but they have no suggestions how to manage my HS to stop these flare ups occurring so if anyone has anything that worked for them I'd love to hear so I can at least discuss them with my GP as a possible way of going forward as he has as much idea as me!

time2deal

MSE Forumteam - what is the guidance on what we can post? It seems hard to answer without at least saying how individuals have dealt with the problem themselves. Does personal anecdotal experience fall under the heading on medical advice?

CustardAndPickles

rozmister wrote: »

Hi,
When they diagnosed it they told me they think I have PCOS because my HS started when I begun puberty. I've been referred for an ovary ultrasound and am waiting for the letter to come through the post to tell me when to go. I'm quite scared because I'm not sure if I want to know (as I could have fertility problems if I have) but I will be going in the hope that if it is PCOS they can prescribe hormones to help with that and in the process help my HS. I've been recommended to try and lose some weight for my HS too and am on Slimming World (7lbs down so far).

Hopefully this post will stay up!

I don't have HS, but I do have PCOS, and I wanted to try and reassure you about being diagnosed. Possible problems with fertility are not something anyone wants, but better you know at 24 than at (say) 38 when options like IVF or adoption become much more difficult and costly.

You don't say what your other symptoms of PCOS are, but for what its worth, I found that weight loss alone really made a difference to mood, fertility and excess hair (you don't mention that, but with HS and PCOS I'd be surprised if you didn't have). You may also find that if you have a formal PCOS diagnosis, laser hair removal on the NHS may be offered - this will realistically be only on hands / face / neck - but if the hairiness is a problem, its a godsend of a treatment and changes you from being excessively hairy to about the same as a "normal" person in the treated areas. And all of that - or even just the weight loss - will boost your confidence no end.

Finally - you mention fear of being intimate. I really feel for you there, because it is so easy - when we see our bodies every day - to focus on the faults and flaws. I know HS can be absolutely dreadful (the 'medical freak shows' like Embarrassing Bodies don't help with that either), but realistically, people don't care when it comes down to "getting it on", they really don't! And if they do, then they're not worth spending the time with. My partner doesn't care when I'm a bit furry, or about the scars I've got on my thighs - he just wants to make me happy and spend intimate time together. You may not look like an airbrushed model from Vogue, but please don't think that you're doomed to be alone because of some scarring.

GeckoGirl1985

Hi Rozmister,

I have PCOS and suffered with HS all through my teen years. It's a horrible condition - I used to suffer with it most badly underneath my breasts where my bra rubbed on the skin, but also in my groin area. It was extremely painful and has unfortunately left me with quite severe scars. After years of antibiotics and topical treatments I eventually got referred to the dermatologist at the hospital who put me on a course of a drug called Roaccutane. It is an extremely powerful drug and although it did help clear my skin up there were a lot of nasty side effects - very dry skin (my lips split and bled every day) and mood swings, and my hair started falling out. Also it is a teratogen, meaning it will cause damage to an unborn baby - as a result I had to have a pregnancy test done every 2 weeks at the hospital to make sure I had not fallen pregnant during the treatment. If you are ever offered this drug as a treatment then please do read up on it so you are fully aware of what is involved.

As for other things you can do to help clear it up yourself - Make sure you only wear breatheable, natural fabrics such as cotton and change your clothes as often as possible. Avoid shaving the areas that get affected as this can encourage lumps to develop. Also I found that using naturally antiseptic body washes was much more gentle on my skin than hibiscrub - the Body Shop do a tea tree shower gel that was brilliant. If you do get a lump, use a hot flannel on it several times a day to encourage it to come to a head and allow it to drain naturally. If you must lance it yourself then make sure you use a sterile needle and wear gloves so you don't transmit bacteria to other areas by accident.

Hope that helps

skint_chick

I have PCOS, sarcoidosis and HS - my HS is linked to the sarcoidosis (an auto immune disease causing joint pains, inflamation, tiredness and breathing problems) and I've found the best solution for everything is eat an anti inflamatory diet. I did a lot of research and discovered that my constant mouth ulcers, skin redness and HS were triggered by eating foods from the nightshade family - potatoes, onions, peppers, tomatoes - and foods high in sugar. I've cut back on processed food, refined flours, red meat and cut out nightshades all together and eat more fish,chicken, veg, fruit and low fat dairy. I've substituted grated carrot for tomatoes in salads and sweet potatoes make great wedges and chips. So far so good, I went from constantly having HS, mouth ulcers and sore throats to feeling relatively normal. I've had one HS outbreak this year when I had potatoes two days in a row then a takeaway pizza but even it was a lot less severe, bumps didn't come to a head and were gone within a week rather than the 3 weeks they used to last.

I would get a good moisturising cream for your scars to help improve the look of your skin - organic coconut oil is lovely or virgin olive oil.

orlao

rozmister wrote: »

It's hell and it's so embarrassing! Where do you get your aloe vera gel from please, like is it from a health food shop? I'll definitely try it because I've got nothing to lose and it could help!

Ooops, looks like I broke the rules - apologies MSE team.

I get the Aloe Vera at Holland and Barrett when they have the penny sale (which I think is on now?) and stock up. Usually the Aloe Pura brand, it works out at £6.50/£7 for 200ml x 2. I've also bought it online but you do have to make sure that it is the 99.9% aloe vera gel.

http://uk.best4deals.com/general-health-c229/aloe-vera-gel-12oz-p19761?utm_source=google&utm_medium=cpc&utm_term=fruit-of-the-earth-aloe-vera-gel-foe-av03&utm_campaign=product+listing+ads#22696

Fruit of the Earth is another good brand.

HTH

time2deal

Well, I had never heard of this, but the symptoms sound familiar! I don't get it too bad, but I do get infections from time to time - and the diagnosis years ago when I had a particularly bad one that needed to be lanced I was told it was just a hair follicle infection.

Since then, I get them from time to time and just manage them myself. I agree with the posters above that I only ever wear 100% cotton underwear, and I use simple shower gels, and always applied with a loofah. The loofah made a difference I think - gives you a mild exfoliation each day. I use Sanex these days, but have used things with teatree in them in the past.

If there is a breakout, then I constantly apply disinfectant cream (don't put your finger on the end of the tube. Squeeze out a little onto the back of your hand, or somewhere else, then wash.)

I did use a scar cream. I can't find it online, but I got it from boots - not something expensive, I think it was with the first aid section. It worked sooo well on the scars on my inner thighs, which were really embarrassing. Now they are basically gone. I think age helps - I rarely get breakouts now, but also perhaps I manage it a bit better.

rozmister

Custardandpickles - that makes me feel much better to think if it like that, that if I find out now I have more time for IVF and adoption. I was thinking of it a bit like a life sentence looming over my head rather than a precaution! I am trying to lose weight on Slimming World at the moment and am slow but am now 7lbs down. I'm very overweight though (BMI over 30) so I have a long way to go to get down to a better weight for myself. That is the other reason they think I have PCOS. Bizarrely I don't have a lot of body hair though, in fact I'm pretty unhairy for a grown woman but I am extremely fair (in skin and hair colour). I hope someone wants to be intimate with me one day! I used to have no trouble with blokes but I work long hours now and I don't seem to get the male attention I used to which could be due to the extra 2 stone I now carry!!

Geckogirl1985 - at present my Dr said I'm not serious enough to be put on really strong drugs because they want to see if my HS progresses before they do that. I'm hoping that with weight loss and trying lots of other ways to manage it I may be able to get it sort of under control and avoid having to take them. I didn't know about the hot flannels and the tea tree oil shower gel but they're great ideas. I should have thought of tea tree because I know it's a natural antiseptic but I didn't know they made it in shower gels.

skint_chick - you're the second person to mention the nightshade family! I eat loads of all the stuff in it so I might try and cut them out for a few weeks and see if that makes any difference. I've tried cutting out dairy, refined sugar and gluten but that didn't make much of a difference.

Orlao - I work near a holland and barratt so I can pop in and have a wee browse of what they have aloe vera wise I used to work in a health food shop and I do think there are lots of natural remedies that can help with things like this.

time2deal - they originally said mine were an infected hair follicle and I guess HS is kind of like that as it is the plugging of a hair follicle. I do get these small whiteheads that when you squeeze out comes a hair perfectly in cased in a white so I suppose that diagnosis is right. My big lumps don't seem to have hairs in them though although it's hard to tell. I think they're properly blocked up sweat glands! I'll have a look in Boots for a loofah and some scar cream. I did use bio oil but I found it seemed to spread my HS (perhaps from touching the areas and spreading it) but perhaps a cream would be better.


Thank you so much guys for answering, it makes me feel a lot better that I'm not the only one out there although it's rubbish you've got similar problems because I know what a pain they are. I don't know anyone like me medically so it's a bit lonely!!