Hello,
I am new here. I am struggling to keep it together today and decided to post on here - I hope no one minds.
I have a history of endometriosis but at 53 was hoping I'd now be in menopause and the hell would be over (I had 2 laps; 1 ovarian cyst; infertility and a whole world of pain). Last year when things were improving and I was in perimenopause and feeling better on HRT, I experienced severe pain and bloating. I had an internal scan which diagnosed another ovarian cyst (but described as 'simple') and 12mm endometrium and possible polyp. I was told there was nothing to worry about so battled through (again!) Then they wanted to do a biopsy in April when I confirmed nothing had improved despite a health kick and weight loss (I'm about 15-20lbs overweight). They were unable to do a biopsy in the day clinic and I had an extreme pain response which was literally PTSD inducing. They had another go at a biopsy in day surgery under GA, but the consultant told me they were unable to do it due to severe cervical scarring. So in May, I had an MRI with contrast, which shows my lining had thickened to 15mm and suggested polyps with recommended histogical confirmation (so back to square one). My scans and history were sent to the multi disciplinary team and I recieved an 'urgent' oncology referal for tomorrow, after a long 2WW. Today, Guy's have called me to say that due to 'lack of staff' they cannot see me tomorrow and it has been moved for 2 weeks time - so a 4 week wait since referal to oncology!
In the meantime, I can't wear anthing fitting over omy waist or abdomen due to the pain and bloating, I'm knock-out fatigued; I keep spotting watery discharge and i'm scared. (I have ovarian and breast cancer in my family).
I feel better after just writing this down - it's been so frustrating and I had a melt down this morning when they called to cancel - so no need for a response. Just the fact this forum is here has helped.
Wishing you all peace and strength.
xx
Hello Kittengn
Welcome the Online Community. It is absolutely fine to post on here as much as you need to. It is understandable in these circumstances to find it hard to hold it together and we are all used to having a wobble now and again. I certainly did last year- many a time!
I am sorry to read of your journey so far. Endometriosis, cysts, thickened womb lining and polyps. It's a lot to go through. I found my biopsy/hysteroscopy painful at the time and I have had friends who have also had to have it done under GA. It must have been extremely painful for you if they were unable to complete it under GA due to the scarring on your cervix.
I see you had an MRI in May and that this showed a thickening and suggested polyps.
I can understand how frustrating it must be to be all ready geared up for an appointment tomorrow and then it is cancelled at the last minute. The extra 2 week wait will be hard but do not be afraid to contact your doctor during that time if there is any increase in symptoms or anything else that causes you concern. I wonder also if you spoke to the dept and asked to be put on a cancellation list, whether that might help. If you were able to go in at short notice for eg; if someone had to cancel at the last minute or tested positive for covid etc etc.
I am sorry that you are feeling so uncomfortable. Does anything help ease it? Could your GP offer anything to support for the next couple of weeks until you are seen. Loose clothing sounds good. With the fatigue I guess the only option is to take it really easy and try not to over do things. The worrying over it all will I'm sure be adding to it.
I can understand the family history causing you to worry. I have a family history of a related cancer to my womb cancer. The thing to also perhaps remember is that you have already had a diagnosis of endometriosis which may explain some of the symptoms. The spotting and watery discharge can have other causes. There are also different causes of hyperplasia (thickened womb lining) so although you are on an urgent referral, it may not be cancer, it may be something else. The important thing is that you have sort help for your symptoms and that they are in the process of finding out what is causing them. Once they know they can work out with you what happens next.
For my womb cancer, my only symptom was a sudden and heavy bleed.
I know you said that there was no need for a response but I just wanted you to know that we are here to support you and if there is anything you need please ask. I always felt better for writing things down as well. Just to get it off your chest.
Jane
Hello Kittengn
Am glad it has been sorted for you to have the hysterectomy asap and it is reassuring that the consultant has a good reputation. I hope your pre op goes ok and that things can get going. It is normal for them to do the pathology post op. Mine took around 3 1/2 weeks post op to come through, so be prepared that it may take a while. However mine was delayed by the Easter Weekend last year.
It is normal to go through all the different emotions- I know I did. But like you felt calmer once the plan was in place.
I hope all goes well and please keep us updated.
If there is anything else that you need please just ask. I found the hysterectomy fairly straightforward, I stayed in over night and went home with very little pain. Just a case of taking it very easy for the first couple of weeks.
Good Luck
Jane
