About 16 days ago I was on the forum with the same problem but it was dark red Bleeding around 20 minutes but I couldn't see any clots as the bleed was heavy together with period cramps especially on my right-hand side, called the GP who said he would get in touch with my oncologist Dr Rose and Dr Mills as well as the scanning department to get my whole pelvis and ovaries done, the scan happened last Thursday 31st August everything looks fine although there are light pockets of water she thinks Unfortunately she was unable to tell the proper thickness of my womb lining because of the coil being in situ which was great news that I hadn't expelled it when bleeding.
The radiographer said she was going to contact Doctor Rose (who's is one of the nicest Doctors to talk to and Doctor Rose's husband is also a gynaecologist in the RIE both are really nice people) she also said she would contact Doctor Mills who is also nice within the team, I did voice my praises regarding how Doctor Rose knows her craft especially with fat women and that she was the one who managed to get my biopsy after the first consultant failed and she also got the cancerous polyp out when that other Consultant failed again when I was under general anesthesia, his notes said "Couldn't get past tilted cervix due to patient being obese and unable to reach cancerous polyp. I have had 3 hysteroscopes done without any anesthetic that is 2 biopsies and the removal of the cancerous polyp during Doctor Rose's and her teams lunch hour 5th January 2023 for that I gave the Merry Juice and Hotel Chocolates.
Anyway it was decided that I phone the nurse specialist who I haven't heard from in 4 or 5 months (maybe she forgot my name who knows) so I left a message for her explaining the phone call but I also left a message with the cancer hub for her as well, eventually got a phone call asking "how things are doing and that the funny thing was she was about to call me" " Aye right " I explained everything twice as usual as she has a habit of talking over you and missing the facts, she said she has Doctor Mill's Clinic on Thursday 7th September 23 and she was going to " speak to Doctor Mill's about what our next plan was !!! " and about the cramps I am having and look at different pain relief when having the cramps as I am taking Mefenamic Acid 250mg 2x 3 daily Paracetamol 250mg 2 x 4 daily in 24 hrs then my other meds (baclafen, oxycodein 5 mg 10mg for breakthrough pain and 30mg X2 daily nerve pain meds antidepressants also help nerve pain tummy medication BP tablets Diabetic tablet x 1 daily then 2 insulins background and bolus not forgetting the Provera 30mg X3 daily) she mentioned "bruprofen", I told her "to look at my notes as I am allergic to bruprofen" (oh yes I see it now she says !!!)? She spoke about the UTI problems I have been having and asked " why haven't you had Penecilline that would have cleared things quicker" once again look at my notes were it says allergies next to bruprofen it should have Penecilline & Citrus" ( oh yes I see it now ???)? She mentioned that the "coil was not expelled during my heavy bleed which is good and that I need my bloods done".
I told her that I feel so fatigued at times and end up sleeping all day and night some days and that was before the UTI'S. And that I don't really care if it all comes out or stays in because I am too fat, that I am fed up with the infections and the bleeding and continued cramps either before I bleed and during and after I bleed and that I have small clots everyday and continuously wairing pads which break me out as I must be allergic to them (Always & Tena) as well, I also feel that people are hearing me but not LISTENING with the health profession, Unfortunately my husband overheard me saying what I said and he got a little upset and angry with me, so I just have to pull myself out this rut I am feeling, and as she said contact Macmillan for Psychological help whilst I wait for the NHS Cancer Psychologists as well as going to McMillan or Marie Curie hubs as talking to others can help as well.
Good Morning Wilma
I am sorry to see that you are still going through all of this, still having bleeding and are not really getting any further forward with it all. It must be incredibly frustrating to feel that you are not being listened to.
I am glad that the scan you had last week was ok and that the coil is still where it should be.
It is good that the radiographer is contacting the 2 doctors that you have dealt with before and have managed to do the past hysteroscopies and that are nice. It makes such a difference if you have a doctor who is supportive and friendly. I hope you do not have to wait too long to see them.
I am sorry that you have not had any contact from your nurse specialist for so long. I hope that she does indeed speak with the doctor during today's clinic and gets you some answers.
The fatigue sounds horrible and I can understand how fed up you must feel with the UTI's and the bleeding and cramps. With the added discomfort from the pads as well. They really need to listen to the whole picture and talk to you about what the options are for you. I wonder with the pads if there is another option. I remember seeing some unbleached bamboo pads and I wonder whether it may be worth trying them? You can get via Amazon or chemists/supermarkets.
Sharing with others does help but I can understand that you feel stuck in a rut with all of this. It must be so frustrating. It must be difficult for your husband as well to see you struggling with it.
I see you are waiting for the NHS psychologists. There is some counselling available through Macmillan and I will pop a link below for you. I will also put a couple of other links that may be of interest regarding emotional support.
Free specialist counselling for people with cancer | Macmillan Cancer Support
Macmillan Buddies | Macmillan Cancer Support
There is also the Support Line (details at the end of this) where you can talk to someone about how you are feeling. They can also talk about other support that is available and also if there is anything local to you.
I hope this helps a bit. I am sorry that you still have all of this going on and hope that you hear something back from your CNS after she speaks to the doctor at the clinic today.
Jane
Hi WILMA 08
Could part of the pad irritation / reaction be from Tena chemicals being designed more for urine incontinence than for blood? Maybe a friendly Boots pharmacist or your specialist gynae nurse can also give pad advice?
I'm finding having a few different trusted brands and variety of thicknesses is helping me adjust to each day's need and reduces irritation. Excuse the pun, but i can't resist : it helps me go with the flow 
.
I also use some Dermol 500, wiped on using some toilet tissue, helps keep me a little fresher and cleaner after heavy or messy bleeding stints in the days. I also use Dermol 500 as soap substitute when showering to hell reduce irritation further. My GP prescribes my Dermol 500.
I even had a whole 1 day of bleeding recently, so my rainbow of hope is getting brighter.
Hi WILMA 08
I was wondering how are you getting on with Mirena, bleeds and your wellbeing overall?
Hi Wilma 08.
It sounds like yesterday's meeting was quite positive on a clear way forward. Hope it all goes well with your robotics team.
Due to my pre-childbirth status, I'm still on conservation route where possible. I have to have more biopsies done now to check on womb status.
One consultant has also raised concerns with negative risks of Mirena to ovaries.
I'll review everything with Gynae consultant this week.
Hi WILMA 08
I can answer two of those questions - I have no ankle biters of the two legged variety + I've been very fortunate that my journey into my own cancer world was probably more of a relief than a worry as it finally helped GPs realise why I had been unwell for sometime.
As for the rest, I hope to discover more from my new consultant this week and in the coming weeks.
Good luck at the Royal Infirmary and finding the right treatment plan to match your own choices. Your wishes are the most important part of it all.
Banana with peanut butter on crumpets or toast used to be my favorite.
