Swollen lady bits! Does it ever get better?!

Hi everyone,

 
I've read loads on this site but haven't contributed much; mainly because I'm not sure what use my responses would be!
 
A little about me. I went to the Drs with bleeding in between periods & after sex only to be fobbed off by the dr & to be told its probably just my contraceptive implant hormones running low. I was asked if I was due a smear, when I replied with I don't know I wasn't told I should have one. This was over a year ago at the age of 28. I was diagnosed with severe diskaryosis in July 2013, I then had a LLETZ a couple weeks later & was called to return to the colp clinic to be told it was stage 1b1 cervical cancer. You can imagine how angry I am now for that dr not telling me my symptoms were that of cervical cancer. My feelings of this is a whole other can of worms!! I had an abdominal radical trachelectomy, to preserve fertility as I don't yet have children, the day after my 29th birthday in mid September. In my post up check, I assumed it would be a check of how I was healing but no. My consultant broke the news that the cancer had spread to 3 out of the 5 lymph nodes I had removed & I would need chemoradiation therapy; rendering me infertile & not able to have the children my boyfriend & i planned to have. I was not prescribed HRT until I displayed menopausal symptoms for 2 weeks of utter misery.
 
So here I am, 5 months post op & 2 months post chemoradiation finishing; I still have swelling above & below my abdominal scar. My pubic bone below my scar gets so swollen after standing & walking around I can barely even see my lady bits!! The swelling of my tum above my scar jiggles when I try to get back into jogging & is really sore. I can cope with the discomfort & downright pain I get at times but I am utterly miserable with how my body shape has changed. It makes me feel sick to massage the bio oil on my scar to hopefully make it fade, I am truly disgusted every time I look at it going to the loo or undressing. I had an emotional breakdown shopping for clothes a couple weeks ago where I burst into tears & ran out the changing rooms. I feel so shallow but I'm not the girl I used to be. I used to be so confident about my body & really fit, regularly competing in triathlons & challenge runs. Basically if you thought you'd have to be nuts to do it, I did it! My friend & I even won the commando challenge in Exeter the year before last. I used to love my body & now I despise it. I cry most days.
 
I guess what I've love to hear is any advice to reduce swelling & fluid build up. I asked my gynae specialist about it today & he said I could try "rubbing it" although the swelling may never go. Less than helpful I'm sure you agree.
 
I'm sorry for wittering on. Just want to say you ladies are such an inspiration to me when I read your posts, you are all truly amazing
 
Natalie xxx

Hi Natalie,

I'm so sorry you are having a rubbish time. I think the way our bodies can change after this illness can really knock our confidence and make us feel down and these feelings should not be underestimated. So I'm sending you a big hug.

So, it sounds to me like you have lymphoedema. You can get swelling from lymphoedema around your pubic area as well as your legs and this happened to me too. So the bad news is, it's not curable. The good news is there is loads you can do to improve it and keep it controlled. I did a little post about this a while ago so I will update it for you below:

 After my rad hyst and lymph node removal my groin / pubic area was quite puffy on the right hand side. It did go down a lot but has always been a bit puffy! My ankles also swell now and then. I mentioned it to my GP and also my consultant at my 3 month check. My GP kept saying it was early days from my surgery and I needed to wait for it to settle and my consultant said it was lymphoedema but it wasn't too bad so let it settle and it might get better and wear Brigette Jones knickers for support......

 Hmmm, so I thought, are you kidding me, is that it! Is there nothing I can do?! Well , yes there is! I researched and found out that there is a lymphoedema clinic at my local hospital and asked my GP to refer me. The appointment took 3 weeks to come through (which I didn't think was too bad). The specialist nurse there was lovely! She confirmed I have mild lymphoedema. She has given me support tights and stockings and some compression knickers (I know, but at least they also come in black, ha ha). These are better than the tights etc you can buy at M&S and the thickness etc they give you depends on the amount of swelling you have. It’s not always convenient to wear them but they really help if you're having a busy day walking and standing and don't really get time to take a rest.

 Then we started on manual lymphatic drainage massage and 'taping' techniques. I had appointments for this once a week for all of February. The aim was to reduce the swelling as much as possible and then for me to be able to manage it myself going forward with simple lymphatic massage. OMG, it really works. I do the massage and you can see straight away that the swelling has reduced. So this along with exercise really reduces it. I feel so much better. You have to do it every day and it takes around 20 minutes. If I miss a day I do notice it.

 My lymphoedema is pretty mild. But if lymphoedema is not managed then it can get worse and is of course not curable, so you have to make sure you do everything you can to stop it getting advanced. I did loads of research and these guys really helped: http://www.lymphoedema.org/

 Unfortunately, lymphoedema is one of the possible side effects of treatment. There is very little help out there for it. A lot of the health professionals know little about it. You really must insist on a referral. They don't have the clinics at every hospital so you may have to travel. But it really is worth it to get the help you need.

 Hope that has helped. Feel free to PM me if you need any more info.

 Take care, Tess xxx

 

Hi Natalie,

I had an abdominal procedure too and have regularly found myself sobbing in changing rooms! I'm almost a year on from surgery now and I'd say it took mine 8 months to start 'deflating'. For the past 3 months I've had core physio and started running. Both of these have really helped to get my body looking and feeling more like mine.

I still get some swelling but it improved lots with time and I thin in the next 6 months I should be back to 'normalish!'. My scar is invisible some days but then others is read and angry! i use Bio Oil too.

So it can be the long game, and also lymphoedema as Tess says so best to check that route out too.

I totally understand about being fit before then not recognising yourself, it's knocked me for six. But you WILL get there, just tiny steps and you will get back to doing what you were before.

Take care xxx

 

Thank you so much Tess, your advice was so incredibly useful. I'm doing some investigating to find my local clinic & making an appt with my GP.

 
You've made my day!!
Take care
Natalie xxx

I'm glad that helped Natalie.  As Jo said, all this healing takes time, but it's frustrating isn't it! Let us know how you get on. xx

Hi I am new here....I am 4 months post op and 4 weeks since radiotherapy I am noticing that the right side of my pubic area and groin are swelling up a fair amount... there is also pain like bruising on my upper thighs and below my scar sort of around the top pubic bone... on the right I also notice what seems to be a gland that swells up at times too.. I am so frightened. I hate to even touch there...plus I don't have much senstation either..  I have to start using a dilater too and I just don't know...how or what to do:(