Severe nerve pain after hysterectomy

[Rosefence]

Hello everyone,

My mother was recently diagnosed with 3a2 HGSOC. I am still in shock and trying to find more information on this specific sub-stage, as it’s not very common (any reading suggestions are welcome!).

I am writing as my mother had a hysterectomy about 4 weeks ago and is about to start chemo. Ever since the hysterectomy, she has nerve-related pain in one leg. The pain is severe, indeed so severe she can hardly cope, even with medication. She has also problems walking.

The most likely reason is that she was wrongly positioned during the operation. Has anyone of you had a similar experience and how long did it take for the pain to get better, if it got better at all?

Thanks you for any insights, and wishing you all the very best!

[Sunsetime]

Hi Rosefence, so sorry your mum is uncomfortable with pain in her leg. I found after surgery (6 weeks ago), my neck was really sore which I put down to the length of time on the operating table. I have arthritis, it took me by surprise, and took a few weeks to resolve. If your mum hasn’t already done so would be worth calling the medical team to check it out. A cancer diagnosis is so overwhelming and takes time to make sense off. I have high grade serous ovarian cancer stage 3, not sure if this is the same subtype as your mum. I am in the uk and find ovacome and macmillian sites helpful for information. I found searching on the internet took me down rabbit holes and to be honest confusing and scary .The data is so out of date on the internet, there are many new treatments now with positive results. I do hope your mum pain gets better soon and best wishes for ongoing treatment. You take care of yourself too, I know I how much I value the support from my family and how tough it is for them too. Xxx

[Rosefence in reply to Sunsetime]

Thank you very much! Yes, she has the same type of cancer. I am sorry about the struggles you have been facing. It’s really difficult!

In my mum’s case, the pain is so strong that we are now trying an opium drug. All other drugs didn’t seem to make it better, and she is getting very weak as a result of this excruciating pain. We have talked to the doctors but there doesn’t seem to be much to do. She was generally in good shape, before the operation, but she is currently very weak and I don’t see how she can go through chemo like that! We are at a bit of a loss of what to do.

[Sunsetime in reply to Rosefence]

Hi , pain is so debilitating , and recovery from the operation itself does take time. Hopefully your mum’s oncologist knows about the pain she is experiencing and this will be considered alongside the timescale for starting treatment. We get so much information about the side effects of chemotherapy and fear of the unknown tough to deal with. I remember how scared I was before starting chemotherapy and much to my surprise although side effects unpleasant way more manageable than I had anticipated. From what I have read high grade serous responds well to chemotherapy and so far this has been my experience. Xxx

[Lara1]

Hi Rosefence,

Really sorry to hear about your mum’s trouble. It may be a completely different situation, but I could not feel my legs for a couple of days post op due to the epidural they were giving me for pain. Now I have a medical history of MS prior to the surgery, and luckily I recovered. But had it not been the case I would have asked for a neuro check-up (i.e. brain & spine MRI, etc.). The surgery and the drugs they give for it, including anesthesia and pain meds, can have unwanted side effects. I hope it gets sorted out and your mum gets better very soon. Best of luck!

[Rosefence]

thank you so much for your response! I am glad your numbness disappeared after a few days. My mother’s leg was initially also numb, but now the numbness has given way to horrible pain. Apparently the likely cause is wrong positioning during the operation. But it is completely unclear how long it may take to recover. It could take months from what I hear.

Thanks for your response, and I wish you all the very best!

[Trickysite]

Don't be afraid to nag. Patients have to be their best advocates. As a top surgeon once told me, it's the squeaky wheel that gets oiled. Emma xx

[OvacomeSupport Partner My Ovacome Team]

Dear Rosefence,

Thank you very much for your message. I can see that you have already had a number of lovely responses from our community sharing their experiences, but I just wanted to send a quick message as a member of the support services team at Ovacome.

I am so sorry to read that your mother is experiencing severe pain at the moment. It is good to hear that you have been discussing this with your mother’s team. As Trickysite says, if you are worried or if the pain persists or worsens, I would encourage you to contact them again for advice.

In your initial post you mentioned that you have been looking for information about stage 3a2 HGSOC. We have a booklet about stage 3 ovarian cancer which explains staging in more detail. I will put a link to this here if you would like to take a look: ovacome.org.uk/stage-3-booklet

Please don’t hesitate to get in touch with our support team if there is every any information that we can help with or if you or your mother would like to talk. Our support service is available Monday – Friday, 10am – 5pm. You can reply directly here on the forum, email [e-mail] or give us a call on 0800 008 7054. We’re here to respond to queries, provide information, help prepare for upcoming appointments or just have a friendly chat about anything that’s on your mind.

I also wanted to let you know that we have a family and friends support group that is held on a monthly basis over Zoom. The next session is due to be held on 27th August 2024 at 11:00am. Here is a link to some more information: ovacome.org.uk/event/family... . If you are interested in attending, please do let me know if we can help with any further information.

I hope that your mother’s pain improves soon.

Best wishes,

Cathryn

Ovacome Support