Oh boy, am I fed up with all of my problems since my op on the 26th June! First I was left with bladder issues (which are slowly improving),
I had a reaction to the surgical glue and was left with an abdomen covered in blisters and rashes, and now 14 weeks post-op, It would appear I have lymphodema in the pelvic, groin region! I saw a lymphodema nurse yesterday (I didn’t think too much of her to be honest) who has shown me some basic massage techniques to do at home. My understanding is that most will develop it in a limb, but not me, I get it in my lady bits.
As if going through cervical cancer and loss of dignity isn’t enough, I now have a pretty gross lady garden! I am beyond mortified and feeling sorry for myself. I was just starting to get my head around possibly having sex again and this happens, which has totally put me off.
Just looking to vent here really, and ask if anyone else has ever had this, and what helped? Or even, does it go away??
Yes, I’m glad to be rid of the cancer, but I’ve really had enough of all of these new problems now.
Hi Vla
I’m afraid I can’t suggest anything to help but I just wanted you to know that I have exactly the same thing, so you’re not alone. It was like that immediately after surgery for me and so I thought it was just some expected swelling, but now it comes and goes, 4 months later. Really annoying and looks… weird. I have no idea what makes it worse or better either. I try to laugh about it - that, the four beautiful scars and “double belly button” I was also gifted.
Hi
I can empathise as I’ve ended up with lymphoedema in one leg as a result of my cc treatment. My swelling started in my right groin and right side of my mons pubis shortly after I’d completed treatment. Over the following 18 months the swelling spread further down my leg and into my right foot. Everyone’s different and only time will tell how your swelling might develop.
Will you be getting another appointment with the lymphoedema nurse - about 6 month intervals is the norm. If you do start to notice the swelling spreading then i strongly recommend you get compression garments - measured and prescribed by a lymphoedema specialist. Also skin care, regular exercise and maintaining a healthy weight are important - have you been advised about all that?
I’m sorry to hear your lymphoedema appointment didn’t go particularly well; quality of service is a postcode lottery - I’ve had to do quite a bit of self advocating to get the help I needed.
The following links are for organisations which I think are helpful:
www.lymphoedema.org
www.lymphoedemaunited.com
I’ve been through quite a lot with my managing my lymhoedema so if you have any questions I’m happy to try and help.
x
P.S. I control the swelling on my mons pubis with a lymph pad cut in the shape of a triangle and covered with a piece of tubifast or actifast bandage (blue line) for hygiene. The covered pad is held in place by close fitting knickers. Also it’s important your underwear doesn’t constrict you e.g. don’t have tight elastic in the waist/hip bad or round the legs as this will impede drainage of the lymph fluid - I find no VPL knickers are best. LinK for the lymph pad (I use the one with the smaller circular bumps): https://www.medi.de/en/products/medi-lymph-pads-leg/
I think you should be able to get the lymph pad and bandage on prescription.
Hi ladies. Thanks for your replies.
@Jazza, I’ve actually got an appointment at the Oxford lymphoedema practice this Friday, I saw from previous posts you’ve been? I’m booked for an mri scan first & then the 2 hour consultation including scanning with the dye. I know I’m not quite at 4 months post op yet but want to get on top of it asap. I’m a very impatient person!
I’m just struggling to accept that this is the new me.
Yes, I had an assessment at The OLP late 2019; the surgeons are a good team and will give you an honest opinion about whether they can help you. Unfortunately my lymphoedema had already progressed to the point that I was not suitable for LVA or VLNT reconstructive surgery; it’s good you are getting an assessment sooner than later.
Interesting you are getting an mri scan prior to your consultation; the protocol must have changed since I went.
Hope all goes well for Friday; it would be interesting to hear how you get on.
Best wishes
x
