(Cramps after stopping pulls and awful clots

Hi Sharon,

I'm so sorry you are gong through this worrying time. Waiting for results is so difficult - especially when the dreaded word cancer has been mentioned. I'm not surprised you are scared. 

I am not a doctor so I can't answer your questions about whether you have done damage by stopping taking the tablets - although I seriously doubt it. However I can share some general information. 

Fact 1: Most women with abnormal vaginal bleeding do not have cancer. I think it's in the region of 90%

Fact 2: Most cases of womb cancer are caught early and successfully treated with a hysterectomy and no further treatment is needed. 

Fact 3: Most (90%) of womb cancers are hormone related; some early pre-cancer lesions can be successfully treats with progesterone in the form of the mirena coil. 

Fact 4: Around 10% of womb cancers (so about 1000 cases a year) are aggressive cancers that are more like ovarian cancers in that they stay hidden and produce symptoms such as bleeding only when widespread. They are often diagnosed late but can be treated with surgery and chemotherapy and/or radiotherapy. 

Fact 5: It's ok to treat the symptoms as long as the hospital is investigating the cause. 

So. I hope you will be one of the majority - either it's not cancer or it's an early catch. You'll find lots of support and practical experience here in this community. If not and you are one of the unlucky ones who is diagnosed late with an aggressive cancer then there is still a lot of practical experience and support here. Either way, you are welcome. 

I hope this helps. 

Love and hugs xxxx

PS there's good information about womb cancer generally on these pages over on the main site. And yes, that's me on the first page :-) xxx

I had horrendous bleeding. Provera was the only thing that stopped it for me. To help stop the flooding tanexamic acid, clots the blood so it all comes away in a oner like a kidney. Memofenic (sp?) Acid for the cramps and bleeding reduction. When I told my GP what was happening I came out of the surgery with the last two. The Provera came from my consultant as they wanted the bleeding stopped before surgery. I'd also get a full blood count done not just your HB but the other iron levels too. I ended up with a ferrite deficiency this being my iron reserves. I think two weeks is too long to wait. Try another doctor in the practice. With these medicines and an iron infusion I was able to keep working until my surgery. My uterus was described as over vascularised hence the severe bleeding. Until someone experiences mass blood loss like this they don't really understand. I sat a few times on the loo thinking, this is it, I'm gonna end my days on the pan! Get back to the Doc don't wait two weeks.

Unknown said:

Hi Sharon,

I'm so sorry you are gong through this worrying time. Waiting for results is so difficult - especially when the dreaded word cancer has been mentioned. I'm not surprised you are scared. 

I am not a doctor so I can't answer your questions about whether you have done damage by stopping taking the tablets - although I seriously doubt it. However I can share some general information. 

Fact 1: Most women with abnormal vaginal bleeding do not have cancer. I think it's in the region of 90%

Fact 2: Most cases of womb cancer are caught early and successfully treated with a hysterectomy and no further treatment is needed. 

Fact 3: Most (90%) of womb cancers are hormone related; some early pre-cancer lesions can be successfully treats with progesterone in the form of the mirena coil. 

Fact 4: Around 10% of womb cancers (so about 1000 cases a year) are aggressive cancers that are more like ovarian cancers in that they stay hidden and produce symptoms such as bleeding only when widespread. They are often diagnosed late but can be treated with surgery and chemotherapy and/or radiotherapy. 

Fact 5: It's ok to treat the symptoms as long as the hospital is investigating the cause. 

So. I hope you will be one of the majority - either it's not cancer or it's an early catch. You'll find lots of support and practical experience here in this community. If not and you are one of the unlucky ones who is diagnosed late with an aggressive cancer then there is still a lot of practical experience and support here. Either way, you are welcome. 

I hope this helps. 

Love and hugs xxxx

Danoni thank you for that.  It has mad me feel a wee bit better

I had a pelvic ultrasound and biopsy and hysteroscopy and they've ruled out polyps and fibroids so I guess the options are narrowing. 

These tablets my gynacoligist said do the same job as the mirena coil. I don't quite understand how a womb cancer can be hormone related and it scares me to think that the progesterone tablets like I was given, or something similar, might be the only treatment? Does it just go away? Will they have me back to check up? 

Thanks for all the support, I found this site when I lost my mum 2 years ago and it has been a lifeline at times. 

Unknown said:

I had horrendous bleeding. Provera was the only thing that stopped it for me. To help stop the flooding tanexamic acid, clots the blood so it all comes away in a oner like a kidney. Memofenic (sp?) Acid for the cramps and bleeding reduction. When I told my GP what was happening I came out of the surgery with the last two. The Provera came from my consultant as they wanted the bleeding stopped before surgery. I'd also get a full blood count done not just your HB but the other iron levels too. I ended up with a ferrite deficiency this being my iron reserves. I think two weeks is too long to wait. Try another doctor in the practice. With these medicines and an iron infusion I was able to keep working until my surgery. My uterus was described as over vascularised hence the severe bleeding. Until someone experiences mass blood loss like this they don't really understand. I sat a few times on the loo thinking, this is it, I'm gonna end my days on the pan! Get back to the Doc don't wait two weeks.

Hi twinstwice, thank you and I hope you're ok now. You've properly been through the mill!

I was seen b the consultant gynacoligist at the hospital who did the tests and gave the tablets. I had FBC done the week before along with umpteen other things they tested it for and I couldn't believe it but I'm not anaemic! Must be all the broccoli, lol my family are so sick of it

I'm now 8 days into my 2 week wait so not long now 

Hi Sharon,

The whole hormone-cancer thing is horribly complicated. I have a degree in biochemistry and I struggle with it so I pity anyone without specialist knowledge trying to understand it. When you think about it, though, our wombs are basically bags of hormone receptors. It's hormones that stimulate the womb to produce the lining, ready for a pregnancy, and hormones that trigger release of an egg. It's hormones that trigger the womb to shed the lining as a period if we don't get pregnant. And that's just part of the story. 

So I think it is not so surprising that in cancer, there are changes in the way that cells respond to hormones. Around 90 to 95% of womb cancers are linked (and that is not the same as caused) by exposure to oestrogen without progesterone; it seems that the cancers are "fed" by oestrogen when there is no progesterone around. So if we are post menopausal and overweight - we no longer produce the two hormones but our fat cells produce oestrogen-like substances - then that is a risk factor. There are others. HRT with no progesterone, for example. At any rate, the thinking behind using progesterone in early womb cancer or pre-cancer (called atypical endometrial hyperplasia) is that it will halt the growth of the cancer. That's kind of the story although maybe simplistic - but I hope understandable and helps you to understand why you've been given the treatment you have. 

OK. Lecture over. As you were :-)

xxx

Mightymouse said:

Twinstwice22

I had horrendous bleeding. Provera was the only thing that stopped it for me. To help stop the flooding tanexamic acid, clots the blood so it all comes away in a oner like a kidney. Memofenic (sp?) Acid for the cramps and bleeding reduction. When I told my GP what was happening I came out of the surgery with the last two. The Provera came from my consultant as they wanted the bleeding stopped before surgery. I'd also get a full blood count done not just your HB but the other iron levels too. I ended up with a ferrite deficiency this being my iron reserves. I think two weeks is too long to wait. Try another doctor in the practice. With these medicines and an iron infusion I was able to keep working until my surgery. My uterus was described as over vascularised hence the severe bleeding. Until someone experiences mass blood loss like this they don't really understand. I sat a few times on the loo thinking, this is it, I'm gonna end my days on the pan! Get back to the Doc don't wait two weeks.

Hi twinstwice, thank you and I hope you're ok now. You've properly been through the mill!

I was seen b the consultant gynacoligist at the hospital who did the tests and gave the tablets. I had FBC done the week before along with umpteen other things they tested it for and I couldn't believe it but I'm not anaemic! Must be all the broccoli, lol my family are so sick of it

I'm now 8 days into my 2 week wait so not long now 

Just to add, I've just spoken on the phone to my doctor at the surgery and she has prescribe tanexamic acid for me to start straight away   and she is ringing me again on Monday to see how things are

Thank you daloni, that does make enough sense for me to be going on with. I'm grateful for your reply.

I remember hearing the hyperplasia word during my hysteroscopy. 

If they give you progesterone to try and stop the cancer developing, will they scan again to check all is well?

My pathology showed that the progesterone I was taking was having a positive effect on my womb lining. The thickness in some areas had gone back to normal. My lining was 4 times thicker than it should have been. I was on Provera 30mg 3 times a day, it stopped the bleeding. I only took the Provera for 6 weeks so it worked well I think. My hospitals protocol was 6 months with Mirena coil then a pipette biopsy to check lining. Didn't work for me as the clots dragged the coil out after 10 days. So yes if its caught early enough it can sort pre-cancerous cells that's why they do it. Next step after that is ablation then if that doesn't work hysterectomy. I'm in SWScotland and protocols seem to differ from Trust to Trust. I hope the tanexamic helps it can be a bit shocking when the clot comes away. It can help by giving you a sense of the volume of loss so you can keep track of it.  

Hello Twinstwice22

Thank you for this post, which I read with interest as it discusses one of the things on my mind recently. Does this mean that the treatment with the Provera tablets meant you had no cancer cells in your womb lining? I am going to see my consultant on Friday about further treatment. I am concerned because though I am hoping there are no cancerous cells, I  would rather have surgery to remove everything than go onto treatment with tablets and a coil. I had a thick lining (hyperplasia) with abnormal cells, and scarring of the uterine cavity and possible septum and loads of laser surgery for endometriosis in the pat. I just find it all quite stressful, really. The stages of your treatment seem to be quite extended over time. Are you able to manage that? I think I will try and convince the consultant to do a hysterectomy. Thank you for highlighting this, as it has been an issue I have been worrying about!

Best wishes