I was diagnosed with CC in September. Graded 1b2 and had a radical hysterectomy with lymph node removal in November. No evidence of spread to lymph nodes and no further treatment needed. My hysterectomy was a abdominal surgery and i have the horizontal cut rather than the vertical cut.
I am now 13 weeks post op and doing pretty well except for a couple of issues.
I have the expected tyre above my cut but also feel like i still have swelling to the pelvic region. Its not massive but definately swells up and goes down. I dont think i have swelling to inner thighs but its hard to tell. I have big thighs but was very fit prior to my op and after 3 months laying off the thighs just feel less toned. I was told about lymphodema but didnt get any input on massage, physio etc that others seem to have.
On top of this i still have some light discharge which is watery and yellow. Not much…need to change a panty liner twice a day. I have also been put on vaginal estrogen so ive wondered about whether its connected to that or could be lymph fluid.
I have rung my oncology nurse who is going to bring my next consultants appointment forward but i wondered if anyone has any thoughts on whether my swelling is normal or on the discharge side of things.
I am now back to being fairly active. Run/walking, pilates, doing kegel exercises and small amounts on my rowing machine as well as walking my dog an hour each day so i would have thought i should be doing enough to move everything around. I have running compression leggings …are these the same type of compression as needed uf its lymphodema ??
I first developed lymphoedema shortly after completion of my treatment Spring 2017. My GP referred me to a lymphoedema clinic where my legs were assessed and measured for compression stockings on prescription.
In order for compression stockings to effectively control lymphoedema they need to give graduated compression so there is higher compression at the distal (foot/ankle) part of the leg than at the proximal (thigh) part of the leg. In this way excess lymph fluid is pushed up the leg towards the heart then to the thoracic duct where it enters the blood circulation and can be disposed of via the kidneys in the normal way
It’s highly unlikely that running compression leggings would give the proper graduated compression or give enough compression to control lymphoedema swelling. It’s even possible thay could make things worse e.g. if they were tight on the thighs and loose on the ankles. Ideally compression garments for lymphoedema should be prescribed by a trained specialist but if you wanted to DIY Daylong has a good website offering quality garments with sizing guides; you shouldn’t go for anything higher than light compression class 1 without medical advice in case of venous/circulatory issues:
https://www.daylong.co.uk/
It is possible for excess lymph fluid to leak through the skin in the area of swelling - something that’s known as lymphorrhoea. I’m not an expert but I’ve never heard of lymph fluid leaking from the body in the form of a vaginal discharge.
It’s good you are exercising because movement definitely benefits the lymph system. However too much exercise can overload the lymph system and make lymphoedema worse.
The Lymphoedema Support Network (LSN) is great for support and information. I recommend their recently published book ‘Your Lymphoedema - taking back control’ which includes a photo guide to to the latest techniques in self lymphatic drainage (SLD) massage:
https://www.lymphoedema.org/product/lsn-book-your-lymphoedema-taking-back-control/
From what you say it doesn’t sound to me that you have symptoms of lymphoedema. However one can have impaired lymph function before symptoms appear. Subclinical lymphoedema.can be picked up with an ICG lymphography scan; not available on the NHS I’m afraid but if interested the following link gives further information:
Further to my first comment: swelling in the pelvic region swelling that’s persistent or comes and goes may be a sign of lymphoedema. My lymphoedema started as slight swelling and discomfort in the pubis/groin area and at the top of one of my thighs. I was advised that any swelling up to 3 months post treatment may be due to normal post op swelling; you are at the 3 month mark or just beyond now. Hopefully your oncology team will be supportive about your lymphoedema concerns. My team weren’t great, even though it was clear my swelling was increasing, and I ended up self advocating (via my GP) for a referral to a lymphoedema clinic. Be aware that not all GPs are very knowledgeable about lymphoedema so seek a second opinion if you’re concerned.
Thank you very much for your comprehensive information. It is much appreciated and has given me a lot better understanding of it all. I will wait to see what comes from my consultant appointment, provided its not too long and take it from there and go to my gp if things change at all. Thanks again and i really hope you are coping ok with it xxx
Me again. I think that my team are going to address my issues and i have been put in for a early consultant appointment next week to assess. Ive done alot of reading in the meantime as i have been told there are delays with referral to the lymphodema clinics in my area.
Ive tried to find someone in my area to see privately for massage/,drainage as this appears a good idea whether confirmed or not as i certainly have swelling. Do you know how i ensure i get a fully qualified person? Is there a national list or a particular qualification i should be looking for. I rang my local private hospital they thought they had a physio who could do it, but that wasnt really good enough for me.
Good to hear your team are supporting you. Delays with lymphoedema clinic referrals is a too familiar story I’m afraid.
From personal experience I suggest MLDUK therapists for private massage. Those with ‘member DLT’ after their names hold full qualifications in MLD (manual lymphatic drainage) and are fully trained to treat people with lymphoedema. I’ve seen a couple of MLDUK therapists and had good experiences with both. See following link:
https://www.mlduk.org.uk/therapists/
Also you could call the LSN for guidance about accessing private treatment: https://www.lymphoedema.org/
In the meantime a couple of tips:
Whenever possible, elevate your legs to help drain lymph fluid.
Skin care is very important because lymphoedema increases the risk for cellulitis. I think the following video explains it well (the lady in the red dress is the lymphoedema nurse advisor for the LSN)
Thank you so much…that is such a great help and gives me a great starting point. I have started the extra skin care and carrying antiseptic cream. I read also to elevate legs but im a bit confused. As my swelling is in my pelvic and stomach region would i not be pushing more towards it if i elevate my legs. Im sure im thinking that wrong!!
Anyway thanks again i really do appreciate all your help xxx
You possibly have a risk for lymphoedema developing in one or both your legs and elevation should help reduce this risk. However, listen to your body and if you feel elevation is making things worse stop doing it and discuss with your therapist. The swelling in your pelvis/stomach region needs to be managed with techniques such as diaphragmatic breathing and MLD/SLD; a therapist will be able to advise.
It’s expensive but something else you may wish to consider is an appointment with LymphVision: http://www.lymphvision.com/
Thank you once again. I will do a bit of trial and error and see whats best. I should have been able to work that out on my own but cant see things for the meltdown at the moment.
No worries, it took me a…g…e…s… to get to grips with managing my lymphoedema (still things to learn) plus all the other post treatment isssues. Hope all goes well for you.
x
