Please help! Does anyone have any info/advice for genital/vulval lymphoedema? This is a recent development and quite painful/distressing:(

[facey72]

I also have secondary lymphoedema in left leg/groin/lower stomach, managed with MLD & Jobst garments.

[dianapenny]

Hi

Yes I have suffered for many years and it has recently got much worse. I also have lymph blisters developing which are caused by the lymph trying to get away. I am having these removed under general anaesthetic but they always come back and the doctors say that they are difficult to eradicate. Wearing supportive under garments help reduce the swelling but I have found that sometimes I get cellulitis (a red rash, soreness and temperature) if I wear the support for too long, do not know why. So I go for periods without support but it does mean that the swelling gets worse.

I agree it is very painful at times especially with the blisters.

Do you get irritation and a prickly sensation in the skin? I use Aqueous Cream to try and keep the area moisturised. I sympathise with you as it is miserable.

[AnneBury]

Hi. I suggest you contact the Lymphoedema Support Network (lymphoedema.org) - if you haven't already done so. Details of their telephone helpline are on their website.

[cherrylann]

Hi facey72

I have had genital lymphodema for three years after Lymphadenectomy for vulva cancer .I get the tingling painful episodes and have had cellulitis around my lower abdomen which is very unpleasant .I asked when the swelling first became apparent if there was anything I could wear to help reduce it and was told to buy some spanx ,I have been wearing sloggi control pants which are very comfy as they are cotton .

Unfortunately I think its something we just have to get used to and I am thankful that I haven't had the lymph blisters that dianapenny has had poor lass .

Keeping the skin well moisturised is very important ,I use dermol 500 lotion which is very soothing .Try asking your lymphodema nurse about lymph massage too as I have heard this helps .Take care x

[Hidden]

How distressing for you, while I don't know anything about your 1st condition, the left/groin/lower stomach is different. You already have compression garments and are managed by MLD, have you looked to see if there is a Healthy Steps programme in your area. This form of exercise while being fun, also opens up the lower lymphatic system to help it drain away. Deep breathing exercises will also help the stomach. If you can get some "childrens bubbles" from your local pound shop then blowing bubbles is a great way to help with breathing exercises. Finally swimming. Take care.

[MarianneC]

Hello there,

Very sorry to hear you have this condition. I have suffered from it for many years following aggressive treatment for cervical cancer. After years of growths on my vulva and repeated attacks of cellulitis I was diagnosed with genital Lymphodema. Like you I had these removed several times but they just grew back. I was appalled by the lack of knowledge of this condition by the medical profession. You need to get referred to a Lymphoedema clinic as that is where you will get help with undergarments, creams etc. I also wear rubbery inserts which pad the area and silver membrane dressings which help to stop the cellulitis.

I had very severe lymph blisters over the vulva which leaked all the time causing constant infections. I had these removed again last year by a plastic surgeon who knows about Lymphoedema. He is based in Scotland and is excellent. (Mr John Telfer) He made a brilliant job of it, so much so that I didn't even get cellulitis after the op. However more importantly I have also had a procedure called LVA (lymphaticovenular anastomoses) which is Supermicrosurgery and involves rerouting lymph channels so that the immune system works more effectively. I got this treatment 4 months ago and have already had excellent results with hardly any cellulitis and only very slow re growth of the blisters. I had this done privately at Oxford Lymphoedema Practice, part of Nuffield Hospitals. If you look up Supermicrosurgery for Lymphoedema on google you will see info on this. My operation was carried out my Dominic Furniss and Alex Ramsay.

However the down side is that I had to pay for my treatment as the NHS is my area would not fund it. In total it cost me about £13k. They say it is an experimental procedure even though it has been operating for at least 10 years in Japan.

I don't know what area you live but it might be worth looking into.

Regards, Marianne

[BRachel in reply to MarianneC]

If possilbe, could you tell me how they removed the blisters. I had mine 'frozen' last year, but it was a horrible experience, and they are back. I am looking for other options. I too am suffering repeated cellulitus infections from the genital blisters. I feel like I am looseing the battle and can't find anyone with any solutions.

[MarianneC in reply to BRachel]

Hi, mine were removed by either cutting them out with the deeper ones and cauterisation for the lesser ones. Only once did I have a local anaesthetic which was not pleasant. All the rest of the times it’s been a general. Regards, Marianne

[LymphSuppNetwork Partner LSN]

Hi Facey

The LSN do a leaflet on genital lymphoedema which has lots of information - give the office a ring on 020 7351 4480

[Rosesibbs]

Sorry to hear that... I can imagine that can be distressful does your MLD therapist also do genital lymphatic drainage...? This is a specialist field. Also I have learnt that Sports Direct do Jogging Pants for only £5 and they do look and feel brilliant it is worth trying. In addition to your Jobst garments. Also SLD which your Practitioner will demonstrate to you. You can buy a DVD from LSN or from Amazon on SLD for less than. £5 or search in You Tube (as silly as it sounds...)

[suzie_danger_girl]

I agree with the tips about swimming and deep breathing exercises. I tried to find a way to make this interesting, as I am a busy person and frankly I don't find standing around hiffing and puffing very exciting. Having tried a few things like playing the flute, I settled on singing. I massively massively recommend this to all who have lymph issues in the tummy. I am not religious myself so I had no real interest in singing choral, so I jpined rock choir. Within 2 weeks all my problems with eating and being breathless were gone, and I am so much better in myself overall. In swimming I actually went as far as joining a synchronised swimming club and again the fact I'm holding my breath a lot and the pressure of the water have been insanely effective. I agree there isn't much knowledge around I'm afraid, but these really work for me. I agree with the comments I have proper haddenham veni tights but I wear sainsburys or asda compression tummy garments. Some have long pants which go up tp your bra, some have squishy vests. I did try prescription ones at first but they were not that great actually, the elastic was tighter at the top which actually made fluid pool on my tummy.

I'm gonna be the one that says it, but if you are lucky enough to get some horizontal exercise with the opposite sex, its also helpful in keeping the swelling soft and pushing it away. And it gets you deep breathing. So in fact although its horribly painful and upsetting, if you can get it under control or get some help to do so there are very fun ways which are effective at kkeeping you healthy.

Hope you find success in getting well xx

[DebbieML]

I have just been diagnosed with Lymphoedema in the mons pubis, genital area following a routine hysterectomy 9 months ago. You are right there is not a lot of information for this condition so reading through these posts has been a real help. When you are diagnosed with something like this you feel like your world is falling apart and will life ever be normal again. I have yet to get help at the local Lymphoedema clinic due to re-occurring infections.

Although I would not wish this on anyone, it's good to hear from others who are going through the same thing.

I wish you all well x

[Hidden]

I had a hysterectomy 2 years ago because of endometrial cancer and since then I have had pain and pressure in the genital area.....all my check-ups to this point have proved negative for recurrent endometrail cancer...but still this pain persists...I had a vaginal biopsy done 2 weeks ago and the result proved negative to cancer but it did say I have chronic inflammation ...On the one hand they have discharged me back to the care of my doctor ..but they haven given me an appontment for next Wednesday...HMMMM probably to check on the inflammation. I am wondering if it could be lymphoedema...I do have secondary lymphoedema in both lower legs and lypoedema in both thighs...I am just sounding off here ..but will contact my lymphoedema nurse tomorrow as I really would like to know for sure...and to find out if I need to do anything special re travelling cos I am flying to Houston TX from Auckland New Zealandin 12 days...that is a 14 hour direct flight...