Genital Lymphoedema after Hysterectomy

[DebbieML]

Hi there, I have recently been diagnosed with Lymphoedema of the mons pubis following a routine hysterectomy in June 2014, not cancer related. No lymph nodes were removed, but my lymphatic drainage was compromised through surgery. I would love to hear from anyone who is experiencing the same, and how you learn to cope with it, as I am told its a very rare complication. I am 6 weeks into diagnosis following severe cellulitis in January, hospitalised for 1 week on UV antiobiotics, and further infections which I am still trying to cure so I can start treatment at the Lymphoedema Clinic. Help or advice will be much appreciated. Thanks.

[Julia-25]

I too have mild genital lymphoedema(mons pubis and labia,well the bit of labia that's left after surgery and radiotherapy for vulval cancer) unlike you though I also had a Lymphadenectomy ,my lymphoedema mainly affects my leg. I don't actually do anything at the moment for the genital area,however I wear class 1 comoression tights. My lymph nurse said once to me that there wasn't a great deal they could do but a pad under knickers and tights provided extra compression and could be beneficial. Hope this helps.

[DebbieML in reply to Julia-25]

Thanks for your reply Juliajane.

Sorry to hear you have had Vulval cancer, hope you are recovering or have recovered well? Do you find your genital area swells at all, or are the compression tights helping prevent this. I haven't heard of them, but like you I have been told about the pads, which I assume you would need to wear every day?. Sorry for all the questions, but may I ask how long you have had Lymphoedema and is it easy to manage on a daily basis? I haven't spoken to anyone else with this, so have lots of questions about how this will effect my life ongoing. It's all a bit daunting

[Julia-25 in reply to DebbieML]

Hi Debbie,I have recovered well thanks,surgery in 2013/14,radiotherapy finished July 2014,I was already aware of the risks of developing Lymphoedema and pushed to be referred to a clinic even before starting Radiotherapy so was fortunate in that respect. My lympoedema nurse has been very helpful,my leg is mostly affected around the thigh and she was happy to get me the correct hosiery,in my case tights as these would help with the genital swelling,which fortunately isn't very much and so far hasn't needed any other treatment. I don't actually wear pads as I find they make you even warmer and uncomfortable. I have experienced cellulitis once but it was well controlled with antibiotics and no need for in patient treatment. Vigilant skin care is most important,keep the area clean and well moisturised,exercise but don't over do it. Hopefully once you are seen at clinic you will be given specific advice and help.

There is plenty of information on the LSN website and I believe they are most helpful if you telephone,also check out the Macmillan website. Hope this helps you.

[Beebee62 in reply to DebbieML]

Hello! I'm wondering how your treatment went? I'm newly diagnosed as well with lymphoedema of mons pubis that has gone undiagnosed and untreated for 2 yrs. I recently went to PT specialist and am hopeful I'll see results! It's been very difficult to deal with the whole body image.. I'm also struggling to find compression garments that will meet the need of the area. Any thoughts or suggestions will be appreciated.

[Lynora]

MLD will definitely help - if your lymphoedema clinic do not offer it, try an independent therapist mlduk.org.uk. Has a list.

[DebbieML]

Thankyou both for your help, it's much appreciated.

[patsy1702]

I also have lymphoedema of the mons pubis area and sometimes the vulva also both legs from a hysterectomy due to cancer 18 years ago. MLD helps greatly and I wear pads when the vulva is bad depending on how much swelling depends on the no.of pads but for me they do reduce the swelling. It's not very comfortable but you soon get used to it and if caught early enough it helps. For the Mons Pubis area I wear a pad made from some of the bandaging foam and I cut it to shape and place it inside the front of my tights on the abdominal area, this also helps me. LSN website has info on this and a phone call to the office will point you in the right direction for help. So far I haven't had cellulitis in that area so I am fortunate. It all sounds very daunting but it's trial and error seeing what helps you feel more comfortable. In 18 years I have tried everything. Exercise and diet also play a big part in managing this for me.

Good luck with everything and hope you feel more comfortable soon.

[DebbieML in reply to patsy1702]

Thanks Patsy. Do you have a burning sensation with your swelling? I am trying to understand what's Lymphoedema and what's Cellulitis. I have been told to take it easy but also keep active. I am struggling to know what's easy and what's active, I was a very active person before, walking the dog for an hour before breakfast was just the start of the day, now I can't even walk for 20mins /day without feeling the effects. You say your diet has played a big part, can you elaborate on this for me? They say cut out sugar? I am only 8'5lbs (5'3"), so can't afford to loose weight

Do you wear your pads every day even after 18 years?

So nice to hear from you. Sorry for all the questions.

[patsy1702 in reply to DebbieML]

Hi Debbie. With regards to the burning sensation with the swelling I have only had that when my vulva are is swollen usually in the hot weather, but as I said I haven't had cellulitis in that area. Can you get some MLD and at the same time the therapist will teach you how to self massage it does help greatly. Regarding the exercise I can only tell you what works for me, and of course we are all so different. The worst thing for me is standing or sitting around so I tend to exercise(like you I have a dog) walking and I play tennis and the other usual things gardening and decorating. When I am not actually doing anything physical I try to lie with my feet up but ankles level or above hip line. It does take time to work out what is best for you I have tried dozens of different methods sometimes hit and miss. No I don't wear the pads all the time in fact not much just when the vulva swells and I have been known to wear 3 pads at a time not very comfortable but I usually only have to do that for a day or so and very infrequently. Give the LSN a ring and they will send you fact sheets on everything from diet to exercise and just talk you through things. Do you have a lymphoedema clinic near you if not maybe you could find a private therapist. My GP paid for me to have 5 session some years ago after I had breast cancer. I believe it's always worth asking. M&S make some long line girdle typ pants with a jelly band at the bottom of the leg to help keep them from riding up I found them a great help at the beginning for about 2 years. I wish you all the best and hope you manage to find a clinic or therapist in your area.

[DebbieML in reply to patsy1702]

Hi Patsy, thankyou, this makes me feel better. I wondered if I would ever be able to take the dog for a walk again. So hearing your story makes me feel positive. I have an appointment with the clinic on Monday. Like you say it's all about learning to manage it. I think my problem has been all the infections, and as soon as I can get to grip with these, I will then be able to start MLD and start to see some improvement.

Thanks again and warm regards x

[patsy1702 in reply to DebbieML]

Good luck DebbieML I shall be thinking of you. Sometimes with this condition we have to be a little bit pushy and demanding for the treatment we should be entitled to although we all know it isn't a priority generally. You can do it and I am sure it will improve with time and trying different methods and garments. Once you get measured for your compression garments and begin wearing them that will help enormously. Don't be diffident about telling the Dr. therapist or clinic just how daunting you are finding it all and how you feel about the diagnosis after all they are not mind readers. It was 2 years before my therapist really knew how I felt. We tend to put a brave face on so how can they know.Hope to see you have got some help soon. Let us know.Positive thoughts coming your way.

[DebbieML in reply to patsy1702]

Thanks Patsy

[Mistymay]

Hi, I have had lymphoedema in the genital area and my right leg since my hysterectomy 2years ago. I am currently having monthly drainage massage and I find that being on my feet for too long will cause me to swell. The best thing I have found by far are pants from a company called leonisa they are online and they are called post partum panties. Before I started wearing them I was in a lot of discomfort every day., these pants are helping to keep the swelling down. I have tried several other pants and none of them come close to the leonisa ones. Deep breathing regularly also helps to clear my stomach area. I also find that when sitting it is better if I can stretch out a bit and not be so bent over if you know what I mean? Self massage is good too if you can get someone to teach you how. I feel for you as the genital area is a hard spot to try and treat.

[DebbieML in reply to Mistymay]

Hi Mistymay, thanks for this. I will have a look for these pants, they sound like they might be a great help too. Yes I know what you mean about sitting, they call we the 'Sofa Sloth ' at home as I sit with my feet up and legs akimbo, not very lady like I know, but it helps. You mention the deep breathing clears your stomach, do you find that you get swelling above your scar, lower abdomen? A lot of my swelling is above the scar and down the right side of it, by lunchtime.

[valkerry24 in reply to Mistymay]

Oh my, a massive thank you for pointing me in the right direction for some extra support by recommending that company Leonisa. I've had a look and to be honest, I just filled up when I saw what looked to be idea support wear for me after my treatment and it's side effects of lymphoedema in that area. I've had it for 26yrs now following lots of surgery and radiotherapy for cervical cancer and I've been unable to get the correct help. I do have a MacMillan lymphoedema specialist and I've explained how difficult it is but so far we've not come up with anything as yet. I've only just discovered after wearing the usual support stockings (made to measure) that I can now get a 3 part leg wrap in place of the usual bandaging to take the swelling down on my legs! They're so easy to use with velcro and can be adjusted throughout the day without help Again, thanks for the thumbs up on this link. I'm off to try and order some now... so excited! x *sad aren't I ... lol  

[Mistymay]

Yes I do get swelling above my scar, but mostly below it and then once I get really full of fluid gravity does its job and my labia starts to swell also. This tends not to happen as often now that I wear the pants everyday. But the deep breathing really helps above my scar, I lay on the floor or bed and do some really deep, slow breaths for a couple of minutes it is amazing once you take notice of your breathing how shallow we normally do breathe.

[CumbriaKC]

I have lymphoedema in my left leg, following radical hysterectomy and radiotherapy for cervical cancer 15 years ago. The lymphoedema didn't develop for several years but when it did I suffered cellulitis on several occasions and my lymphoedema nurse put me on prophylactic penicillin (taken every day) - I had no further episodes since. This has helped me to maintain quite a good leg shape and skin condition - I also wear Jobst compression hosiery level 2 thigh length. I had a break from penicillin after a year and shortly after this I had a bout of cellulitis so I am sure it works! I always keep in an emergency pack of alternative antibiotic in case of a different type of infection, especially on holiday. I know your lymphoedema is different but it may be worth asking about prophylactic antibiotics for recurrent cellulitis as I was told that each bout can cause further damage, which is irreversible. Hope this helps, and good luck!

[DeborahS32]

Hi Debbie, I don't know if you're still around here, but if you are I'd be really interested to hear from you how things are with you now.

I've got lymphoedema in whole of right leg plus mons pubis area and into r buttock. I had an abdominal (non cancer) hysterectomy in 2007, then developed mons pubis swelling in 2011 which GP dismissed as poor posture despite me complaining about it regularly over the next few years. Fast forward to 2016 when lower r leg swelled up. Has progressed to current situation, and have finally managed to see specialist lymph nurse who has said that the mons pubis swelling is lymphoedema.

My current hypothesis (as everything else so far has been ruled out) is that groin lymph nodes were damaged in the hysterectomy. But I haven't come across this as a possible side effect of hysterectomy anywhere else.

I do hope that in the past 3 years things have improved for you.

Kind regards, Deborah

[DebbieML in reply to DeborahS32]

Hi Deborah, good to hear from you again.

Sorry to hear your news.

After going backwards and forwards to specialist, lots of different meds and a number of visits to hospital with Cellulitus I am starting to get onto top of my condition. They diagnosed me with Cutaneuos Crohns and Anogenital Granulomas with Lymphadema in the genital area as a result. I did not have this before my Hysterectomy, so I still think it was brought on by this.

I am on full time antiobiotics to prevent Cellulitus and just getting to grips with managing the Lymphadema, but it has its challenges as I am sure you know?

Have they given you any pads to help with the Lymphadema in the Mons pubis area? I take it you are self massaging every day? This has been a god send for me.

If you fancy a chat on the phone, I would’ve happy to do this to compare notes, if that helps? Where do you live Deborah?

Kind Regards, Debbie