Groin swelling

[milomartin]

Hi all new here. I developed right leg swelling 1 month post radiotherapy following hysterectomy for endometrial cancer & bilateral pelvic lymph node dissection. Started wearing class 2 stocking with success, then a couple of months later noticed groin & pubic swelling so my therapist recommended 'bike shorts' totally yuk, then not long after that my left leg began to get tight esp in the calf so now stocking on the left leg as well!!! This whole experience has been horrendous I've become depressed & on medication & find coping with it all really difficult. Back in March I had the ICG test which revealed that the lymph drainage in my legs is pretty much normal all the issues are in my pelvic area. I've just received custom made shorts to provide compression to the groin area which may mean less wearing of the stockings so I was told but it's made absolutely no difference in my groin swelling & im totally devastated. I know that my lymphoedema is mild but being trussed up in stockings & shorts everyday that kill my stomach isn't pleasant. At the moment I can't conceive spending the rest of my life in this stuff! Sorry for the long rant but is there anyone else who has similar pelvic issues or suggestions on coping with all of this.

[Angelil]

Hello there

My swelling is in both thighs, groin and pubic area and I wear custom made cycle shorts too. I find they work really well on my thighs but the groin not so much. I had LVA surgery at the beginning of the year that had helped the thighs even more and I don’t need to massage them too much anymore but my groin still swells. I try to massage the groin area every evening from pubic bone out to hip and then up my upper, outer thigh to waist which I find really helps. I also have a soft ball that I put in the crease of the groin and do some leg up exercises that squash the lymph nodes in the groin when they are particularly swollen. Also exercises that encourage deep breathing and physical movement seems to help too (yoga and swimming). If you can find a yoga teacher that has experience of working with LE patients all the better.

I have found it difficult to deal with emotionally too but find that being proactive in my treatment helps as I feel more in control. Also it sounds silly but finding a few outfits that look nice that fit well over my shorts just makes me feel a bit better (i’ve Completely changed the way I dress). I buy fashion compression leggings from primark and wear them on top of my shorts and feel quite comfy in them with a tunic dress more often than not. I have also bought myself a fitted dress that finishes below the knee for a wedding i’m going to as my compression shorts also team as hold you in underware 😃

[Angelil in reply to Angelil]

Ps if the shorts hurt your stomach ask for the waist band to be higher. I had this problem at first but now the waistband sits at the smallest part of my waist and are much more comfortable now. Different brands if shorts also have diff waistband options do speak to your nurse next time and have a look at the options (they will have catalogs and samples)

[milomartin in reply to Angelil]

Yes my new ones are at least a bit more forgiving on my stomach

[sledwards3 in reply to Angelil]

I developed swelling after I had hip replacement surgery on the right side. First hip replacement was on the left which has never caused any problems. however, the right side has swelling in the hip, buttocks, upper leg, my right side and the my public area on the right side only. Have spoken to my primary care doctor but had few suggestions. Sometimes the medical world seems to be useless. But I had read your post and seen that you had found compression wear that is from the waist down. I hove had problems finding this type of garment. What brands are you using...I will try to find them for use. Maybe they can help me with the ongoing problem.

[Blondieone]

Hello

I had a full anterior pelvic clearance that involved removal of bladder and hysterectomy two years ago and also have secondary Lymphoedema in my thighs, pubic area and a little in my right calf and occasionally ankle. I was prescribed level one compression tights by my McMillan Nurse as I find them more comfortable over my stoma. The tights ensure that even pressure is applied all the way up from the foot and I smooth them over after putting them on with rubber gloves to even out any creases. I also walk for at least two hours every day and was instructed on Self Lymphatic Drainage by my nurse also using a stress ball. It's important to start with your breathing and then open up the lymph glands starting under your armpits. I joined the Lymphoedema Support Network where they have lots of advice and videos that can help with exercises and yoga. I've never seen a Lymphoedema Consultant as was referred directly to the Local Lymphoedema Clinic where the specialist nurses access and instruct on your individual needs. Good luck and I'm sure you will get into a routine and support garments that suit you.

Healing thoughts.

[milomartin in reply to Blondieone]

Thanks for the healing thoughts Blondieone, saw my therapist today & he actually mentioned about the stress ball although the ones we happen to have on hand at home is train & 2 cars! but will try they may fit better in groin as opposed to the round ball. Yes I do all the sld & my legs are good except when i go to work as I'm on my feet all day, just gets so frustrating at times, well most of the time, it has changed everything I do cos I have to watch out for my legs dont get cut etc. So scared to get an infection as thats something that will set you back so much. But my rant is done everyone here has something to rant about not just me, you sure have your probs too with a stoma so I send back healing thoughts & blessings to you for helping pick up my spirirts.

[Lynora]

Could you see a MLD therapist, who would teach you how to do self lympatic drainage to help redirect the fluid in the groin?

mlduk.org.uk/therapists

[milomartin in reply to Lynora]

Yes I do all of that but doesn't improve it I guess i just need to come to terms with this condition, felt like a rant that day as its so frustrating. I'm still working as Im only 54 but am on my feet all day which doesn't help. I do everything that I've been told to do by my therapist but just get so frustrated at this condition. Its hard to move on & get over the fact that you have had cancer cos this reminds you of it constantly.

[Lynora in reply to milomartin]

Sent you a PM.

[Angelil in reply to milomartin]

Hi again, I completely understand the cancer thing (I was 36 when I had cancer and developed lymphoedema within weeks of surgery) but I try to make the most of everyday as I feel like the whole experience has made me more great full for what I have and so glad that I am still here for my 3 children. You don’t say how long ago that you were diagnosed with lymphoedema but I found it really hard to deal with too initially (even harder than dealing with the cancer strangely?!) but I guess with time came acceptance so hopefully that will happen for you too.

As for the standing at work, are there any adjustments that can be made for you so that you do not have to stand for so long (sorry I don’t know what you do do it’s hard to know if that is possible). I believe that work places have a responsibility to do that? Even if it is regular breaks to put your feet up for a while or maybe in your lunch break you can go swimming or similar if that is feasible?

[Lynora]

I hear you!