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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