I got diagnosed after surgery earlier this year and the lymphoedema got much worse after radiotherapy. I have found the local lymphoedema service to be quite lacking.
I have it in both thighs, pelvis and abdomen. Sitting is a problem, and I’m uncomfortable wearing clothes that I don’t like but fit loosely, walking is difficult because of the fatigue and I’m at my wits end. Just want my life back. Any suggestions that could help would be enormously gratefully received
Consider seeing an independent lymphoedema therapist. They could demonstrate self treatment and give you advice about how to manage your lymphoedema.
mlduk.org.uk then click on Therapists
Thank you. Found one locally 🤞
Hi Hopeful100,
I'm so sorry to hear about your situation. I don't have much specific advice to offer, only sympathy, as my lymphoedema is in my arm. However, I'd suggest you be persistent with your local lymphoedema service. Mine has been more helpful recently and I've even been offered some treatment, but I don't think anything would have happened if I hadn't kept badgering them!
There are lots of friendly people on this forum in a similar situation who will be able to offer more advice.
Wishing you all the best,
Emma
Thank you. I’ll have to ring them up and explain the compression shorts they sent don’t fit See if they can offer something else
Let's hope so. They should if they don't fit!
YHi Hopeful100
It seems that lymphoedema services are a postcode lottery and I've certainly had some ups and downs with them in my local area.
I suggest checking if there are other NHS clinics in your area you could attend. The LSN will be able to guide you on this; call or email lymphoedema.org
Alternatively, as Lynora has suggested, MLDUK therapists are a suitable option. The ones with 'member DLT' after their names are fully qualified to treat lymphoedema. I've seen a couple of such therapists and was happy with their services.
If you're not already aware, the LSN published a book a little while back 'your lymphoedema- taking back control'. It's a mine of information which took me ages to learn starting 2017, before the book was available. A good investment imo: lymphoedema.org/product/lsn...
Thank you. I’ve ordered one. Hopefully it’ll give some advice.
There’s literally 2 clinics available locally and they’re staffed by the same people. Which is not helpful really. I’ll just have to persevere - my next appointment is in 6 months time. Is that normal ?
Yes, it is if things are more or less under control, but if your garments don't fit properly they should be able to see you before that.
Thank you
The Lymphoedema Support Network lymphoedema.org has a telephone helpline. Details on their website which also has lots of information
Thank you. I’ll have a good look
Hi hopefully 100,
I m 18 months post pelvic radiotherapy. I also had a couple of operations before the radiotherapy. I have lymphedema in my pelvic/genital area as well so my abdomen/apron. Also very recently been diagnosed with it in both my lower limbs. The lymphedema started post radiotherapy.
I too have been frustrated at local lymphedema services both in the nhs and private. I feel there is a lack of knowledge for pelvic/genital lymphedema at least in my local area. However I am persevering with the compression I have been prescribed and have recently taken up swimming as a few professionals I have seen seem to believe it’s the best exercise for lymphedema.
I have also had bowel and bladder problems from the radiotherapy and have felt fatigued. However I can say that in recent months I have felt less fatigued and more able to much more active. I feel radiotherapy really took it out of me and this may be the main reason for your fatigue. It’s been a difficult time coming to terms with it all and I have had a few minor set backs, mostly from getting bugs that seem to take time to get over. But I m feeling more energised so hopefully in time like me you will have more energy further down the line.
I am happy to share more of my experience in the last 18 months if you feel it would be helpful. You could message me privately.
Thank you. My lymphedema service literally measured my thighs and sent me compression shorts. Which I find don’t fit properly and also they’re irritating the wounds in my groin - they gave me pitpacks for the pelvic swelling but I find that they just cut my skin. It’s so stressful. I’m only 3 months post radiotherapy so maybe I’m trying to fast to get my life back ?
I’ve tried a little bit of yoga but tire easily, but thanks for the swimming tip. Perseverance may just be the key!
Be aware there are two broad options for lymphoedema - Non surgical and surgical. They work together and as a patient you can pick from a menu of options. At this early stage you need to find out about the full range of treatments available to you. For example, diagnosis and staging via ICG lymphography helps you learn about your lymphoedema and guides both surgical and non surgical treatments. The more you learn about it at this early stage allows you to optimise your bespoke treatment for what works for you and your life. Early treatment is like compound interest, you might not see much at the beginning but over years it adds up. The NHS provides a range of services but there are other options through non-NHS specialist services, which form part of the menu. IMO the more research you do the better.
lymphoedema.org/information...
Good luck.
Very sorry to hear your story. Hopefully the suggestions in the other replies have helped you. Reaching out for support isn't easy, but for me, it helps me to remember that I am not on my own....
Travelling abroad with lymphoedema 
Do compression pumps reduce a swollen limb?
Is this normal? So many questions 
Lump in groin 
