Lymphoedema in pubic area and top of thighs

Hi

Mum still suffering very badly after vulval cancer and bi-lateral lymph node removal 8 months ago.Severe swelling in pubic area and underneath causing pain and skin to go red. Can anything be done to move the fluid from this area? Tried spanx but too painful to wear. She cries for hours every day. I wish more could be done to help people with this condition. It is so life changing. Xx

11 Replies

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  • Please contact the Lymphoedema Support Network: lymphoedema.org . They have a telephone helpline as well (details on website).

  • My mum finished Radiotherapy back in November for vulval cancer which also affected the lymph nodes. She now has swelling to the pubic area and both legs and has been diagnosed with Lymphoedema. She has been referred to a Lymphoedema specialist clinic, we are just waiting for an appointment. Is there anything we can do to improve symptoms in the meantime, as her legs are so heavy and uncomfortable?

  • That is exactly wat i have. I try to wear those spanx but they r sore to put on. I also got told to try swimming and walking.

    Cause i can only do breast stroke when swimming it was really sore after 10 min. I could hardly get home same if i walk too far.

    I find it helps a bit to sit with my legs up ontop of the sofa when im lyin down. Also i have very long baths sometimes 2 hrs.

    I also take a lot of pain killers but u gotta watch and take them correctly as for a while i was giving myself sore heads by taking them wrong.

    Also u need to watch out for ur mums legs goin red and extra sore while having flu like symptoms as when i get that its usually cellulitis. The pubic area will go hotter and u get to dizzy and sick to stand up. If ur unsure call docs asap.

    Its such a hard time u have my sympathy xx

  • Hi, I would think that spanx are simply too strong in the genital area, particularly if they are a bit long in the leg, the tendency is too pull them up high into the groin and I can imagine they are extremely uncomfortable and are giving a tourniquet effect. I don't know which country you live in, but the important thing is to find an experienced MLD therapist who will advise on the correct protocols for ongoing management and importantly, the right compression for your mum's needs. Let us know where you live and I am sure someone on this forum will be able to recommend a good therapist in your area and advise on the most appropriate course of action for your mum. NNE

  • Hi. Thank you for your comments. We leave in the UK in North East Northumberland. St Oswalds have her on their waiting list but this is since last April. She is now unable to walk much due to the build up of fluid around the knees and thighs and gets terrible nerve pain down both legs. As a family we feel heartbroken that we cannot help. Xx

  • Hiya. Have u tried getting in contact with clan?

    They do alot of diff therapies by professional people. It might be worth a call to see wat they offer.

    Its all free to cancer and recovered cancer patients and also their families

    Fi

  • Oh dear that is a very long wait. Is she getting any MLD at all? It sounds as though you need to find your own private therapist; you can always switch back into the NHS system after the appointment in April if they can offer regular treatment. I know a therapist in the North East but i am not sure how appropriate it is to post a name and contact details on a forum, but if you want to send me an email then i will happily forward her details. naomi@compressiontherapyuk.com

    Otherwise, if you go to the mlduk.org.uk website you can search for therapists in your general area.

    NNE

  • I have swelling in the same area, I have found that being on my feet makes it worse so even though walking was recommended I find that it makes the swelling worse. As for spanx they haven't worked as I think whilst they provide compression, it isn't in the right areas such as the labia. I have started wearing a post partum panty from a company called leonisa and they have been wonderful. They are an American company, I am in Australia and they do ship overseas. They aren't cheap at $25:00 usd a pair but might be worth trying,I am wearing mine every day and notice a difference if I don't. I also have swelling in my right leg and find that it is tricky as what helps my leg (swimming,walking) usually makes my genital area swell. I hope your Mum finds something that helps soon as it is very uncomfortable and very frustrating.

  • Hi Nikk,

    Is St Oswalds a hospice or hospital? If your mum has been waiting since last April 2014, I think it is time that you got in touch with them again. Your mum is in a lot of pain and emotional distress. Why not approach your GP and Surgeon who operated on mum to try to push things forward? Also get in touch with the LSN lymphoedema.org.uk and seek advice, support from them. I don't know if there is a Lymphoedema consultant practising in the North East, LSN would know. I saw Professor Mortimer at The Royal Marsden in Sutton. Please research what there is in the North of England, via LSN. Keeping contacting people is my advice. Wish your family well. Judith.

  • Sorry I meant Marvi 1970, I blame any errors now on Anastrozole. :-) BUT keep pushing for treatment for your mum, even if that means a weekly tel call to whoever may see her! Judith x

  • Not sure wat English procedures are but in scotland there is a set waiting time that u have to be seen by. If not then they have to offer u the chance of going to a diff hospital for free and travel costs are refunded.

    For example my son had to get 2 ops for carple tunnel syndrome. The waiting list was so long he got offered to go to glasgow for it (we r in aberdeen).

    He got seen very fast and everyone was very nice plus it was a private hospital!

    Fi

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