Has anyone experienced lymphedema in their legs?

[mswhoffman]

Has anyone experienced lymphedema in their legs? I Had a full hysterectomy with gall bladder removed. Been on avastin and lynparza maintenance PARP inhibitors, since June 2021.

[Lyndy]

Yes I have lymphodema in my legs which came on during my relapse in 2020. It isn’t curable but I manage the condition with compression and light massage being careful to moisturise every day. Try to get a referral to a proper lymphodema service because they have access to the best compression and have lots of advice to help you xx

[mswhoffman in reply to Lyndy]

Thanks you, that was vey helpful!

[Ge0rg1na in reply to mswhoffman]

Hi Yes I have it too and like Lyndy I manage it but it still restricts my day to day life. Good instruction is important for the soft massage as it does alleviate things. Good luck Gx

[Dales-Rambler]

I don't, but a friend developed it after radiotherapy for cervical cancer. Like Lyndy, she had a referral to a really good lymphoma service (North West England area) and is a member of the Lymphodema Support Network lymphoedema.org/

Best wishes

Sally

[mswhoffman in reply to Dales-Rambler]

Thank you for the support network resource!

[OvacomeSupport Partner My Ovacome Team]

Hi there mswhoffman

Thank you for your post. I can see you’ve had some supportive replies from the forum community so just wanted to share this Ovacome information about lymphoedema that I hope may be helpful: ovacome.org.uk/lymphoedema . On this page there is a recording of an Ovacome webinar held in October 2020 about why lymphoedema can occur in people with ovarian cancer and how this can be managed.

If you would like to talk through this with a member of the Ovacome support team, please don’t hesitate to get in touch. You can message us directly through this forum or call our support line on 0800 008 7054 or 07503 682 311. We’re here Monday – Friday, 10am – 5pm. Even if you don't have a specific question, we're happy to chat through anything that may be on your mind.

Best wishes

Annie

Ovacome support

[mswhoffman in reply to OvacomeSupport]

Thanks for your response. I will look into the resource you gave me!

[delia2]

Hi. I developed it after frontline chemo and surgery. I went to a lymphedema therapist and got measured for compression stockings which I wore faithfully for about 16 months. Then in summer 2020 it was so hot and humid I couldn’t get the stockings on and eventually I noticed I really didn’t have the swelling except maybe at the top of my thighs. I have no idea why it got better.

[mswhoffman in reply to delia2]

Thats good news! Thanks!

[lesleysage]

Hello, I've found that swimming is a really good exercise along with the compression stockings or tights to keep the swelling to a minimum. My lymphoedema has also spread into my genitals so I also have compression knickers/'cycling' shorts...not glamorous!

I'm pleased Ovacome webinar has been pointed out as that's thorough and helpful.

The reason lymphoedema needs to be 'diagnosed' properly is the risk of cellulitis which needs a quick response with a strong antibiotic (flucoxacillin seems to be the usual) and so my GP allows me to have a course in stock at home, which I take away even if only going to friends overnight. My cellulitis develops over my torso, not my legs, due to the three major breast to pubic bone operations which seem to cause my lymph to 'puddle' across my tummy if the compression garments, lymphoedema massage (do it to myself now) and the swimming aren't sufficient to drain it away.

Take care and please ask your GP to refer you to your Lymphoedema Specialist nurse. Lx

[mswhoffman]

Thank you for for your response!