Hi everyone. I was wondering if anyone has had similar symptoms to what I’m having. I was started on Tibolone 5 weeks ago as an add back to Prostap SR while waiting for surgery 2 weeks ago I started bleeding heavily with massive clots. I called the consultant immediately but he was off. I spoke to the nurse who said she couldn’t do anything but advised me to take Tranexamic and Mefenamic Acid until the consultant comes back. I went to the GP on Tuesday because I’m also anaemic so the bleeding doesn’t help. He said my blood pressure was high but couldn’t advise anything since I’m under the consultant. The nurse called back today and she’s booking me in for an urgent scan but I still can’t get an appointment with the consultant because of the strikes and he’s also got annual leave coming up. It’s really getting me down and I’m tearful most days. I’m considering stopping the Tibolone because I read the leaflet again and it mentions that it should be discontinued if blood pressure goes up. Has anyone else had this problem and what were they advised? Sorry it’s a bit long.
Severe bleeding and high blood pressure o... - Endometriosis UK
Severe bleeding and high blood pressure on Tibolone
Hi I'm on prostrap, they gave me tibolone but I haven't tried it as the leaflet said about bleeding and that worries me, as I'm still spotting on the prostrap. I too have heavy bleeding and I'm anemic too. Hope you get things sorted out soon, sending you a big hug x
I was given Tibolone as addback to prostap too. When consultant decided to do surgery she put me on patches instead of Tibolone. Surely there must be more than one consultant that can see you? This is what I don’t get. When you get appointments they say you may not be seen by consultant but one of their colleagues. Your GP is unhelpful it sounds like everywhere these days. I’d ring 111 or try a&e, surely they will have an on call gynaecologist
It’s been so frustrating and I felt like I was just a number and not an actual person. Thankfully the doctor that I saw in urgent care has restored my faith and has pushed for me to be seen.
Hello
Was your blood pressure normal before the Tibolone? Mine tends to be on the low side but haven’t noticed any difference. That said, everyone is different but I think your GP would surely have to advise you to stop if they felt it was dangerously high.
I tend to have a lengthy bleed approx 2/3 weeks after my first Prostap injection, it’s happened twice and is like having 2 periods in one month. Frankly, I always feel terrible after the first injection and then it gets better. Could that be why you are bleeding? In terms of the clots, unfortunately that’s normal for me due to the endometriosis.
I have tried Prostap without Tibolone and it didn’t agree with me, felt like a madwoman and crying about everything.
Perhaps, the nurse could ask the consultant for advice on your behalf?
Hope you feel better soon! 
Thank you for responding. My blood pressure was fine before so it’s been since I started on Tibolone. They also said my kidney function is borderline so not sure if it’s linked as well. Hopefully now that I’m waiting to see the on call gynaecologist I will get more information and a plan to manage.
Hi I'm sorry to hear that you are going through this. Your story sounds very similar as mine, please be very careful with Tibolone. I started taking it in February and had the same symptoms as you however I suffered from a mini stroke 4 weeks after I started taking it and one consultant said this was caused by this drug!
As I am a migraine with aura sufferer I should never have been put on this drug as it can cause strokes.
Make sure to speak to your consultant urgently about this.
Thank you so much for this. I also have migraines but I was never told that I shouldn’t take it. I was actually never told that I was going on the Tibolone because I had gone for a review and I was told to wait. Next thing I was just handed a prescription and told to collect it from the hospital pharmacy. There was no explanation or discussion of what to expect from the treatment. I’m going to mention it to the consultant when I go in. I had decided to stop taking it yesterday so I haven’t had it today. Do you mind telling what your symptoms of the mini stroke were so I can keep an eye out?
So I had a Thunderclap headache out of nowhere that came on all of sudden when I was standing making a coffee. Next I had numbness that spread all down my right hand side and I could no longer hold my cup. My vision went and I'm not sure what happened as my husband came into the kitchen and I thought I was telling him I wasn't feeling very well but he said he couldn't understand what I was saying and my speech was slurred. It was so frightening.
I went to Hospital and stayed for around 8 days, I had scans and a lumbar puncture. To this day I still struggle when too many people are talking or with too much information at once. I am hoping to get my hysterectomy soon after going to a private appointment and then going on her NHS waiting list.
I really hope that you get the proper information and treatment plan as I have really struggled these past 4 years with my fybroids and constantly bleeding.
apparently the gynaecologist I have been seeing is one of the best in Calderdale but she’s now referring me to someone else as she does not know what to do. Now I have my cousin being told she may have ovarian cancer as they found 3 lumps during ultrasound but they tell her one thing and report states another, why didn’t they just say you have three cysts that could be benign. Her CA125 is 13 so within normal range but her stress has now brought on my stress.
I’ve tried both and personally for me it didn’t make a difference! Mind you, I’m now on tramadol and oramorph and that’s not really doing anything either! Can I ask, what’s Tibolone? X
Hiya I was on both for over 6 yrs before I got diagnosed with stage 2 endometriosis now I can’t take any NSAIDs as my tummy is too sensitive it did work for me but the heartburn and stomach problems I had were worse so I take codeine now
hello, how are you doing now? I’ve been on prostap and tibolone since June and developed high blood pressure at the end of November. Never had high BP before! I can’t have my lap surgery until bp is stable but I’ve been on ramipril 3.5 weeks and it’s not come down much at all (started on 2.5mg and now on 5mg). I had symptoms of going really pale and VERY cold, chest fluttering, very bad headaches, arm numbness and tingling (I thought I was having a heart attack!) all my ecgs have been clear and my bloods normal. My blood oxygen level offers anround 93-96 range annd I also have migraine with aura! I’ve stopped taking the tibolone for 2+ weeks and declined next prostap, not taking naproxen or ibru for pain relief anymore.
Just wondering when it will come back down and I can have my surgery!
Hi. I’m much better since I came off Tibolone and Prostap. Blood pressure is back to normal and I don’t have any more headaches. It was only after I came off it that I realised how ill it was making me. I am still waiting for an op date but at this rate I would rather not have the surgery if it means I have to go back on Prostap and Tibolone. I hope you feel better soon.
Glad you are feeling better and bp down. How long did it take? I know what you mean about surgery and more meds 
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