Adenosarcoma

Hi PlutoSerendipity

Welcome to the Womb group.

I am sorry to hear that you have had a diagnosis of womb cancer. I hope that you are beginning to recover from your surgery. 

I also had anti coagulant injections and found them painful. I had a lot of bruising from them. Have they shown you how to use them? It may be worth mentioning to the hospital that you are having red bumps and are sore. 

I don't like injections either. I found with mine it helped to alternate sides on my tummy and also avoid the same place twice. I found it easier to do earlier in the day, otherwise I would be worrying all day about doing them. I found holding them at an angle and doing them really slowly helped. I had less stinging when I removed the needle slowly. A few deep breaths too- as if you are tense it can hurt more- I found. 

Uterine sarcomas are a rarer type of womb cancer and an adenosarcoma is a type of these. There are others such a leiomyosarcoma and stromal sarcomas. 

it can feel difficult when you have one of the rarer subtypes of womb cancer. My own type was rare but in practice I had the same treatment as I would have had, if it had been the more common type. I had surgery followed by chemo and radiotherapy. Mine was also a mixed cell cancer- carcinoma sarcoma. 

Types and grades of womb cancer | Cancer Research UK

It may be worth having a look at the Soft Tissue Sarcoma group to see if there is anyone there who has had a uterine sarcoma. 

(+) Soft tissue sarcomas forum | Macmillan Online Community

We do have the Support Line available form 8am-8pm daily if you feel at anytime it would help to talk things through.

Jane

You are not alone in finding the injections hard. I resorted to numbing the area before and after with a small bag of frozen veg. Not for too long obviously and it might have been all in the mind but it helped me. 

Thanks Clem16, I will try that! 

I also had a hysterectomy Monday 5th (kept ovaries due to age) and have to inject for 28 days. The first 2 were awful but I’ve since bought some Emla cream and it’s been a complete game changer! Put a thick blob on an hour before and cover with some cling film. You won’t feel a thing - thoroughly recommend! After 2 weeks I do plan to speak to CNS/consultant about stopping as I’m moving about slowly but surely. Take care x

Hi PlutoSerendipity, well done on having had your op! I hope your recovery is going well. As you know, the injections are to help protect against blood clots of which there’s a post surgery risk. However, consultants and hospitals do differ as to how absolutely necessary they are. Some hospitals have a policy for advising them for all patients post op, some only for patients who are less mobile and therefore at higher risk. I had decided before my op that I didn’t want the post op injections at home - just the one in hospital and my consultant was okay with that as I was an active person, walking my dog, and that was the policy of his previous hospital. The morning after my op they told me that my hospital’s policy was to advise injections for all! I asked if they were compulsory, and if I’d need to sign a disclaimer if I refused, and they said no. I decided to refuse them - my consultant said if that was the case then I must wear my surgical stockings for 14 days, that I should walk, that I should twiddle my ankles and bend and straighten my legs if I’d been lying down or with my feet up for a while. As soon as I got home from hospital I went for a gentle 5 min walk, and continued to walk twice a day, gradually increasing till by 14 days post op I was up to 30-40 mins per day. I’m not saying that anyone else should decide not to have them - there are some people who should definitely have them, and many may prefer to have them just to be on the safe side, but for me I decided it was worth the risk to not have them. 

I am also very active pre op and am already walking 20-25 min 2x a day at 6 days post op. Doing my physio exs and pelvic floor exs 3x day and wearing my stockings. I might chat to my Dr and see what they say. 

Good to hear your experience. I hope you are doing well now post op. :) 

Getting some of that ASAP!!! Thank you op sister! Hope the recovery is going well. Have you found the squeezy app? It’s for pelvic floor exercises and I am finding it invaluable to help me remember to do them! Apparently we should do them daily for life to prevent prolapse, hopefully this will get me in to the habit! x

Thank you, your information was so so helpful.  I hope you are doing well now post treatment. x

PlutoSerendipity, if you chat to your doctor they will likely say to continue the injections “to be on the safe side”. Just a word re pelvic floor exercises, these should be done gently and not done excessively. It would be wise to check with your CNS as to those. When you say your physio exercises, could you say a bit more?

The exercises including the pelvic floor ones were given by the physio at hospital. They are all gentle and mostly done lying down. I am a physio myself so am very experienced and know my body well. I would recommend anyone to speak to the woman’s health physio at there hospital/ via there GP for advice on exs. There is good advice for post op ( mine was a laparoscopy robotic assisted hysterectomy and salpingo-oophorectomy ) activity levels with time scales on the Royal collage of obstetricians and gynaecologists website ( my macmillan nurse signposted me to it) :) x