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Lymphoedema affecting lifestyle, sex, work - any advice?

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blueskiesinside...
Lymphoedema affecting lifestyle, sex, work - any advice?

I've had lymphoedema in my groin since January this year, it made an appearance not even a month after surgery and has made its presence very known ever since. I know in the scheme of side effects there are many that could be so much worse  but it has had a huge effect on my body image, self confidence and day-today activities and makes me feel so down. 

I had one appointment with the lymphoedema clinic pre-lockdown but there was not a lot of time for my queries or to get advice. At the moment I wear compression shorts most days (I haven't been measured for garmets yet, mine are off the shelf Spanx type things), use kinesiology tape and sometimes use moviderm (I think this is what the the little foam cubes are called which you put in your underwear the help the lympahtic fluid move around).

It flares up when I walk quickly or longer distances - it feels tight, heavy, swollen and can become painful. I normally walk everywhere so I am trying to manage this by having breaks to sit down and rest.  

My partner and I have barely had sex since my diagnosis 7 months ago and lymphodoema plays a massive part in this - for me the lymphoedema gets worse during foreplay. My partner is really kind and understanding and does not pressure me at all but I find the lymphoedema, especially being in such an intimate area, such an upsetting and tangible reminder of cancer and all the feelings surrounding it. 

It has affected what I can wear - no more skinny jeans for me! Most trousers or shorts get uncomfortable after a few hours even when wearing compression garments. I'm basically living in midi skirts and dresses but am dreading the winter as I just don't know what I can wear to feel like me, not be in pain and not be absolutely freezing all the time. 

I work in healthcare and at work I can no longer do manual handling - when I have lifted heavier items the lymphodoema has gotten worse and become more solid. Work have had to make adjustments because of this and I know I shouldn't feel guilty about this as it's not my fault but it's really awkward giving vague reasons as to why I can't do manual handling (it's a big team and I don't want everyone knowing) and again, another stark reminder of how things have changed since having cancer. 

I feel bad for having such a big vent about it but the impact it has had on me feels huge and something I was really underprepared for. Has anyone experienced similar feelings/issues with lymphoedema after CC? Was there anything that helped?

 

Aug 2019 - referred for colposcopy following routine smear

Sept 2019 - LLETZ biopsy showed CGIN high grade abnormal cell changes

Oct 2019 - Diagnosed with cervical cancer (adenocarcinoma) aged 31 ?1a1 but unclear margins

Nov 19 - MRI and 2x further LLETZ biopsies to guide treatment, re-staged as 1b1

Dec 2019 - Pelvic lymphadenectomy

Dec 2019 - Lymph nodes clear - no further treatment required at present; ongoing 3 monthly monitoring. Strongly recommended to have hysterectomy in coming years due to CC and BRCA1 mutation 

Jan 2020 - diagnosed with lymphoedema to left groin

Jazza
Jazza's picture

Hi

I have struggled to come to terms with my lymphoedema (LE) and it has had a huge impact on me physically and psychologically. I noticed swelling in my upper thigh and pubis shortly after the completion of my treatment, so I've had it for 3 years now.  I retired from my demanding and fast paced job, earlier than planned, chiefly on account of a semi-paralytic bladder (that's another story) but I don't know how I would have coped in my role with my LE especially since it appeared in my foot (we're all different and this doesn't happen to everyone) about 18 months ago

Unfortunately LE is not very well recognised or supported by the medical world, on a global basis it seems; help is out there but I've had to be very proactive to find and get it.. It's taken me a long time to get somewhere towards accepting my condition and I've had to commit to an ongoing self management regime to try and stop it getting worse; there's a lot of trial and error involved

If I could start again with the LE, although it costs significant money, I would get assessed with an ICG lymphography scan from the outset. I had a scan at LymphVision, albeit I'd had LE for 18 months by then, and a year later I had a scan at The Oxford Lymphoedema Practice (websites below). Oxford offers scans with a view to surgery (I'm not suitable) but just having the scan was useful and I learnt a lot there. The LE practitioners of both organisations offer advice going forward; their services are complementary to those of the NHS.

Scans aside, my 2 top tips for managing LE would be to get professionally measured for compression garments and ensure good skin care (to reduce the risk for cellulitis) of the affected area. I spent too much time trying to manage with just snug leggings, kinesio taping and self lymphatic drainage massage which have their place but in my experience are not as effective as compression garments. Also I started off with a very low compression strength (class1) stocking which didn't maintain my LE so with hindsight I would opt for a compression garment of higher rather than lower compression strength and if that worked then maybe experiment with a lighter stocking later on. My most effective stocking so far is custom fit, class2, flat knit (you learn this stuff as you enter the world of compression) plus I wear seamless toe caps.

Apart from the NHS LE clinic I attend (currently suspended due to Covid-19) the following  resources have been very helpful for me:

 

  • Information and support: https://www.lymphoedema.org/
  • Book: https://www.amazon.co.uk/Lets-Talk-Lymphoedema-Essential-Everything/dp/1783962852
  • Forum: https://healthunlocked.com/
  • Forum plus patient stories etc: https://www.lymphconnect.co.uk/lymphconnect.html
  • LE practitioners offering manual lymphatic drainage (MLD) massage (I have seen two of these therapists and they were both trained to measure for compression garments and had a lot of good tips): http://www.mlduk.org.uk/
  • ICG lymphography scan plus advice: http://www.lymphvision.com/
  • ICG lymphography scan plus surgery: https://olp.surgery/

 x

 

 

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  squamous  cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
noodlesdoodles

Hi,

You have had very good advice from lovely Jazza, who was so kind to me after I was diagnosed with Lymphoedema too. 

I felt floored by the diagnosis- it felt like a huge, permanent reminder of cancer and it was the last straw for me - even though I knew I was luckier than some. It appeared not long after surgery in my groin, abdomen and upper thigh. 

It felt like the end of the world and takes some getting used to. All I could see were the negatives and you are right, it is always a reminder.

What helped was learning more more about it and realising people did live their lives with it. I joined Lymphiestrong on Instagram and they have information about being active/ diet and general information. I saw people walking in mountains and doing runs - made me feel there was a more positive side than I’d seen.

Definately get help from a Lymphoedema clinic when you can for compression and I use a pump each month which helps.mine are really helpful and knowledgeable.

The biggest thing is to advocate for yourself. Find out as much as you can and get to know what you can do. I built up walking so now can do much more by taking it slowly. Know your own body and work with it.

Acceptance. I struggled as I wanted to ‘fix’ it. I’ve realised that I have to work with it. I’ve found out I have to massage ( SLD - Lymphoedema Support Network), Wear my compression, work with my leg, keep hydrated, watch my diet and stress makes it worse. Basically, to slow down and listen to my body.

Ive found Lymphoedema Support Network, LE&RN and lymphiestrong good sources of information. It is trial and error to find what works for you. The other thing to say is that things change - so it’s more of a moveable feast then a one size fits all way of doing things. I feel there is always more to learn and understand to manage Lymphoedema.

It is a rubbish roll of the dice and I know I felt like you do, but it does get better with time and acceptance.

Jazza and I get it - so anything you need just shout. Xx

May 19 smear June 19 CC diagnosed CT/ MRI July 19 EUA - into parametrium PET scan Results - 2B clinically/. 1b1 radiologically. Decide between chemorads or hysterectomy 30.07.19 Saw consultant- will do EUA / camera and node dissection first. If spread do chemorads 21.08.19 open Radical Hysterectomy and node dissection 2.9.19 NED Nov19 ISC bladder issues Diagnosed with Lymphoedema
noodlesdoodles

Oh and as for clothes.... my whole wardrobe no longer works!! I have to wear tights every day and I’m learning that heat and tights don’t mix!! It’s a learning curve! 

May 19 smear June 19 CC diagnosed CT/ MRI July 19 EUA - into parametrium PET scan Results - 2B clinically/. 1b1 radiologically. Decide between chemorads or hysterectomy 30.07.19 Saw consultant- will do EUA / camera and node dissection first. If spread do chemorads 21.08.19 open Radical Hysterectomy and node dissection 2.9.19 NED Nov19 ISC bladder issues Diagnosed with Lymphoedema
Jazza
Jazza's picture

Really good to hear the update on how you are addressing your LE, noodlesdoodles.  I've not yet done anything with instagram but Lymphiestrong sounds like a good reason to do so.  Something else I haven't tried yet but I'm thinking of carrying a small spray bottle of water to dampen my stocking and get a cooling effect for when it's very hot.

Do you think the pump offers any advantages over SLD? 

In case anyone hasn't seen it yet I like the recent Jo's blog as follows:

https://www.jostrust.org.uk/about-us/news-and-blog/blog/living-lymphoedema

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  squamous  cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
blueskiesinside...

Hi Jazza and noodles doodles,

Thank you so much for your responses! Although I wouldn't wish this on anyone it's so nice to hear thatothat people 'get it' and to hear you you cope and manage with it. I will check out all the resources and organisations you suggested.

Jazza it sounds like your lymphoedema has spread to other areas over time, has this happened for you too noodles? Do you know if this is common? I know everyone's different but I'd rather prepare myself if it's likely. For me my gynae onc team brushed lymphoedema off saying I won't get it or its not a big deal and this did not really help with my feelings around it! 

 Also I think one of you mentioned taking care with diet - are there particular things to avoid or include? I've read alcohol can make it flare up so I just drink occasionally now.

Thanks again ladies for your advice and support, it means a lot to me xx

Aug 2019 - referred for colposcopy following routine smear

Sept 2019 - LLETZ biopsy showed CGIN high grade abnormal cell changes

Oct 2019 - Diagnosed with cervical cancer (adenocarcinoma) aged 31 ?1a1 but unclear margins

Nov 19 - MRI and 2x further LLETZ biopsies to guide treatment, re-staged as 1b1

Dec 2019 - Pelvic lymphadenectomy

Dec 2019 - Lymph nodes clear - no further treatment required at present; ongoing 3 monthly monitoring. Strongly recommended to have hysterectomy in coming years due to CC and BRCA1 mutation 

Jan 2020 - diagnosed with lymphoedema to left groin

Jazza
Jazza's picture

Hi blueskies..

Of those who get lymphoedema (from cc treatment) I don't know what percentage get it in their foot, bearing in mind I had radiotherapy ('fries the lymphatic vessels') as well as lymph node removal.  Strangely,  my upper thigh and lower abdomen look near normal and are more comfortable than to begin with.  Appearances can be deceptive; my lymphoedema (LE) nurses still describe my lymphoedema as mild even in the worst affected area below my knee.  However my ICG lymphography scan (at Oxford Lymphoedema Practice) shows that I have very poor lymphatic flow below the knee and the doctor's report describes my LE in that area as severe. I think there's a good chance that if I'd had a scan earlier on I would have known my LE was likely to progress as I believe the scan can pick up problems before they become apparent.  If the scan does show poor lymph flow then, in my view, it's a reason for getting an appropriate compresssion garment asap; I think if I'd got a strong custom fit stocking much earlier on then my LE might not have progressed so much.  It's also possible that if I'd had an early scan I might have been able to benefit from LVA surgery (expensive) which has the potential to effectively 'cure' LE:  https://olp.surgery/

I had a very similar experience to you in terms of the attitude from my gynae-onc team.  I raised my concerns from the outset and first was told I wouldn't get LE because I'm slim and then, when my swelling appeared, I was advised to 'just wear spanx or cycling shorts'.  There is a school of thought that suggests lymphoedema is a 'cinderella disease/condition'  because there isn't a drug therapy, so no money to be made by the pharmaceutical industry.  Am I hacked off about the situation? - you bet I am.  Hum I'll stop there before this becomes a major rant.

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  squamous  cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Jazza
Jazza's picture

I don't have any strong views about diet in relation to LE except I think it helps to stay well hydrated so it probably is best to go steady on the alcohol.  Alcohol doesn't interest me much but I occasionally work my way through a bottle of wine over several days - I've got a wine saver pump plus bottle stoppers.  I also  generally steer clear of caffeine; luckily I like red bush tea and herbal teas such as lemon grass and ginger.   I'm afraid I'm a goody two shoes when it comes to food and just have a generally healthy balanced diet although I do have treats now and then.  It definitely helps to maintain a healthy body weight as being very overweight is likely to make the LE worse and more difficult to manage.  My precisely measured custom made compression stocking won't fit properly if I don't keep my weight stable.

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  squamous  cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
blueskiesinside...

Jazza, thanks as always for the advice, sharing your experiences and kind words x

Aug 2019 - referred for colposcopy following routine smear

Sept 2019 - LLETZ biopsy showed CGIN high grade abnormal cell changes

Oct 2019 - Diagnosed with cervical cancer (adenocarcinoma) aged 31 ?1a1 but unclear margins

Nov 19 - MRI and 2x further LLETZ biopsies to guide treatment, re-staged as 1b1

Dec 2019 - Pelvic lymphadenectomy

Dec 2019 - Lymph nodes clear - no further treatment required at present; ongoing 3 monthly monitoring. Strongly recommended to have hysterectomy in coming years due to CC and BRCA1 mutation 

Jan 2020 - diagnosed with lymphoedema to left groin

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Moving forward from a cancer diagnosis