endometrial cancer

[Coag940]

Hi, I had stage 2 womb cancer in 2019, I had a radical hysterectomy followed by 5 weeks of radiotherapy and 3 sessions of high dose brachytherapy. Since then I have suffered from sore hips and back but recently this has gotten worse , I have pains down my legs and knees and also it kinda hurts when i pee. I’ve been checked and it’s not a uti. Feel quite alone as medical advice has came to nothing, I also have lymphoedema in my right thigh which is also quite sore. Is this all from radiotherapy? If so can I do anything about it and what pain medication can I take that doesn’t dope me out.

[Skellige Community Pioneer]

Hi there, and welcome to the group. It can be very hard when trying to get advice from GPs, who often are unaware of the side effects of radiotherapy. Lymphoedema and back pain can be two of them, though not always.

I had the same cancer as you, and similar treatment (just 5 weeks radiotherapy) back in 2012. I began to experience late effect symptoms about 18 months after treatment, but it took two years of pushing to get much help, so I know how that can feel.

One change since then is that there are now some late effect clinics around the country, and this site, or the PRDA website and staff can help you find where they are. It’s a bit ‘luck of the draw’, depending on where you are. They can also offer advice on how to discuss this with your GP, and where you can access more information. Pain management is also a topic covered. You can be sure there are others who have the symptoms you have and can share their experiences.

There are also regular Zoom meet ups, if you feel you might like to chat to others (and feel free to have a rant!).

Good luck - don’t give up trying to improve your situation, help is out there, but unfortunately it can take a bit of pushing and shoving to get it. Do write again if there is more you would like to know. Are you in the UK?

[Fika500]

The advice above is very good. Lots of information on PRD website. I would add that it’s worth seeing a physiotherapist. I had pelvic pain since my surgery ( total hysterectomy) and five weeks of radiotherapy. The pain started a few months after the radiotherapy. Once cancer was ruled out by an MRI ( which showed some minor adhesions.. adhesions can cause referred pain & there are exercises you can do .. I found some on YouTube) , my GP referred me to a physiotherapist who diagnosed tightness to some pelvic muscles- obturator,adductor and periformiss. He gave me exercises to do at home which had an immediate beneficial effect. They were hard to do at first but little by little they became easier . I have virtually no pain at all after a couple of weeks of doing the physio. Amazing how one appointment with a physiotherapist changed everything for the better.

Also have you had a Dexa scan to look at your bones? Pelvic radiotherapy can cause micro fractures . Your oncologist should be well aware of this . Is there a specialist nurse you can speak to?

I hope you get some solutions or at least find something to ease the pain.

[Coag940 in reply to Fika500]

Thank you for your advice I have had mris which they have said shows osteoarthritis but never suggest a deca scan or even suggest what I can do for the arthritis. But I think I will look into it. I just feel so alone as there in absolutely no support in area I come from. It still feels like this all happened yesterday I’m just glad to have found this site and I will consider zoom meetings. Thank you again .

[JDKPA in reply to Fika500]

I have had three huge surgeries for "lysis of adhesions" ---because adhesions cannot be removed, only cut apart and separated. And then they grow back. Or cause other problems like bowel obstructions. I have spent weeks in the hospital because of adhesions and there is really no permanent solution.

[Coag940 in reply to JDKPA]

Hi I had to have surgery 2 months after therapy for adhesions think they might be back as I’m sore all the time inside been checked for infections but that’s clear but it nips and stings all the time

[JDKPA in reply to Coag940]

One of the worst things about adhesions is that surgery just causes more to form. It is an endless cycle, it seems. But 2 months seems like a very short time. Mine always cause intense abdominal pain (probably from the bowel obstruction they cause).

Best wishes and I hope you find an answer.

[Fika500]

I forgot to say .. do you see a lymphoedema specialist? Are you using compression ? Doing simple lymphatic drainage ? In addition to muscle damage/ tightness , Lymphoedema may also be contributing to the pain. The Lymphoedema Support Network is worth checking out - website and the they have an area on HealthUnlocked. .

[Coag940 in reply to Fika500]

Hi thanks for advice I seen a nurse once and was given compression stockings but they take 30mins to put on lol I do try and keep it clear but it doesn’t always work depending on what I am doing. Again thank you all for your help and advice I really appreciate it.

[JDKPA in reply to Coag940]

I got the wide-calf compression socks and got them on in a few minutes, but then could not get them off! Took me a half hour. I thought I was going to have to cut them off! I told the company about it, they gave me a credit, and asked me to donate the socks. WOW!

[Coag940 in reply to JDKPA]

I find it best just to try and work with it myself and masssge it when it get bad although it’s sore when massaging it .

[Dizzydisturbed]

I know how you feel about being alone, I’m so sorry and I hope some of the advice above helps. People who haven’t had cancer don’t realise the post-cancer journey is as traumatic and life-changing. If we talk about it, they think we’re ungrateful.

Mine was colon cancer, radiotherapy (plus oral chemo) 7 years ago. Radiotherapy has completely destroyed any chances of intimate relationships as it’s caused the walls of my vag to constantly try and sew back together. The pain during sex is unbelievable.

My boyfriend and I broke up in 2017 and I’ve avoided relationships ever since. I was prescribed all sorts of things to put up there - the only one that helped was discontinued. I stopped using the rest of them (pessaries, dilators, creams), thinking what’s the point?

I’m 64 and have had a full life with many intimate relations so I guess I’ve had my ‘fair share’. My priorities have changed since treatment - in a good way - but still there are times I feel incredibly lonely. I have friends but sometimes, just sometimes, I wish a partner would come along who’d be willing to help me along this rocky post-cancer road.

[Coag940 in reply to Dizzydisturbed]

I’m so sorry for the journey you have been on. You are brave talking about your intimate life , I haven’t told anyone and I don’t think anyone really know how radiotherapy changes your life, I have been unable to have an intimate sex life with my husband, he’s very very understanding but I hate not being able to do it properly. I have had repairs done but still can’t get anything in. Thank you for sharing your journey you are the first I have come across to be so open about and I really appreciate it x

[SGH-Aspro in reply to Dizzydisturbed]

I am new to this family and feel very grateful that I am still alive having survived 45 years from cervical cancer. All those years ago came with a heavy price to pay as too much radiotherapy was given and the uterus bladder and colon were severely damaged. With a hysterectomy and colon resection I improved, however now have bladder and bowel issues. So in one sense treatment saved my life but...... gives you radiation damage which slowly continues. It is a lonely place to be and I personally don't know anybody in my circle who have had a life like mine. xx

[Dizzydisturbed]

Thank you Coag940. I think it helps being anonymous here! I’m on a low as the ex I split up with has reappeared and churned up all sorts of feelings. Take care 😏

[Coag940]

You take care too xx

[Skellige Community Pioneer]

I’m glad the issue of intimacy has been raised. There is a thread in this site where it is discussed, and it is an area for which the PRDA are looking at creating some help and advice information. I have also had to give up on penetrative sex since I had my cervix removed, and only have what they called a ‘vaginal vault’ - which sounds like a nice, spacious area full of valuables - quite the opposite! It’s has taken a while to discover alternatives which are satisfying to me and my husband, but if you are both willing and gentle with each other, I think ways can be found to get a degree of satisfaction. I think I’ve written here before that a sense of humour is necessary. Our intimate parts become ‘medicalised’ during treatment, and it can be hard to break away from the feeling of having an examination. Everyone is different, but again, help is out there, you are not alone. Even sharing stories firm this site with a partner may help.

I’m 65, and I’m not ready to give up on the closeness and fun I had before cancer.

[Lara1244 in reply to Skellige]

Hi there

I’ve been on a journey similar to yours - I had total hysterectomy including cervix removed and had vaginal cuff but am able to have penetrative sex. Needs more foreplay and closeness and with a really good lubricant (YES oil based) it can happen. Hope that helps

Lara x

[Skellige Community Pioneer in reply to Lara1244]

Thanks! It’s good to hear back from people and learn how they manage - and reassuring for others to know a ‘normal’ sex life can be resumed. Yes. I agree time, patience and lube!

[Skellige Community Pioneer]

if you look under ‘sexual issues’ in the posts there are quite few responses - and some excellent advice from others members

[Butterfly006]

Hi. I am new here too. I had very similar treatment to you. I had cervical cancer. Removal of cervix 5 sessions of chemo 35 radio and 5 brachy. Mine was 4 years ago and still struggling. So I suffer with not being able/pain when needing to wee. Mine is scar tissue that closes up the urethra. I self catheterise to keep it open and about every 6/8 months I go for day procedure to have the consultant do it. Hopefully your Dr will listen to you and refer you. It’s so miserable. Good luck x