Hives after total Hysterectomy

[Cathp]

Hi just wondered if anyone else had experienced outbreaks of hives which appear on different parts of the body and then disappear and appear elsewhere - ranging from small to very large welts that are extremely itchy - this has only started to happen since I had a total hysterectomy on the 7th Nov 2016. I have had them every day to a certain extent. Haven't been to doctors yet as wanted to do more research as to why as I know it can e associated with auto immune system and stress on the body.

Any advice on how to control it or why it is happening - nothing else has changed - would be gratefully received. I am hoping it will run its course.

many thanks Cathy

[coniston]

I experienced urticaria Pigmentosa 4 year after hysterectomy also allergy to some products th urticaria has disappeared after 20 year leaving marks to my skin but I still have the allergys . Also I have now dry eyes and dry skin I had puva treatment for my skin years ago for the urticaria pigmentosa Through a hospital consultant.

[lovesradio]

I would suspect stress from surgery and also possibly huge hormonal disruption which in my experience plays havoc with my skin. Good luck with your research x

[Cathp in reply to lovesradio]

Thanks - I also suspect hormones and going into menopause + surgery. But has now been nearly 2 months and regular antihistamines are not really working. Have heard that l-theanine might help so am going to give it a try. Apparently, it calms the nerves, helps with sleep, and can help calm down skin reactions. So here's hoping.

[lovesradio]

Good luck x

[Emma_jane40]

Hi Cath, any update on your research or any solutions in the hives outbreak after a hysterectomy? I also suffer from random hive outbreak after a radical hysterectomy in 2015. It appears on my face and is so uncomfortable and itchy, and when it gets really bad, i have to go on sick leave. I've tried telfast, but it's not very effective. Hives just has a life of its own. Any solutions please? Thanks. Emma

[Cathp in reply to Emma_jane40]

Hi Emma After 16mths of going back and forth to dermatologists locally and in London at the Urticaria centre at Guy's Hospital, I am now on a course of Xolair - it is an expense med and you have to jump through many hoops to get it - however, it is working and the welts etc have gone but there is still some itchiness - you have 2 injections into your upper arm every 4 weeks for 6 mths then a break to see if it starts up again and then hopefully if it does another course. I also joined a great group on Facebook where there are lots of people all over the world who have had success with many different things - there is not one fix unfortunately. Hope that helps. Cathy

[Emma_jane40 in reply to Cathp]

Many thanks Cath.

[Ksaccs]

Any relief yet?. I cant take this anymore. I have same situation

[Cathp]

Hi I am on a course of Xolair injections every 4 weeks which gives me some relief but is not a cure but a suppressant. Although sometimes it does send the body into remission which hasn't happened to me yet.

[Tara_t]

I had a hysterectomy in Dec and having the exact same issue. Was never allergic to anything and now I see these hives that appear and disappear everywhere every single day for the last 2-3 weeks. Benedryl didn't work, nor has Claritin which I'm on currently. Cathp - has this returned after Xolair?

Emma_jane40/Ksaccs - how are you doing? Is this issue still there?

[OZOE]

I’m just now reading this and I’m experiencing the same things. I have had numerous tests done and everything comes back “normal”. I’m dealing with urticaria and doctors don’t have an answer. Frustrated. I have been my own advocate, researching then asking doctors to check this or test that. Next step for me is checking hormone levels. I don’t understand why doctors don’t check hormone levels especially after a total hysterectomy. It baffles me that they don’t feel it’s important. Feeling alone in this struggle. Glad I found this support page!

[Sdt0692]

Hey Cathy,

My mom had a full hysterectomy in February and has had uncontrollable hives ever since. Her doctors had her on steroids that helped but didn’t want to continue them as long term use isn’t recommended. But she is desperate, just wondering if you have had any improvements?

[Cathp in reply to Sdt0692]

Hi - I am so sorry your mum is suffering like this is it horrible - I have managed to get a drug called Xolair. It is quite a journey to get but definitely worth it or has been for me. Your mum needs to get a referral to a Urticaria Centre - there is one in London at Guys and I think one in Leeds or near there. They will access her and then if appropriate prescribe xolair which is a 4 weekly injection - it is an expensive drug ( you don't pay for it on the NHS) so some doctors are a little reluctant to prescribe it. There are also some great Facebook forums for Chronic Idopathic Urticaria - which also have lots of advice, guidance and support. Steroids are never a long term solution and often make it worse as can other anti histamines. Xolair is a suppressant which dulls the histamine response and hopefully she might go into remission - unfortunately that hasn't happened for me yet 4 years later. The one I would say is keep a diary of when it happens and how bad it is and take lots of photos. The consultant will want a full history and it is always good to have evidence as you can bet there won't be a hive in sight when you go to the consultant! Good luck and if you need to chat more please let me know.