Hello my lovelies, I wasn't sure how to even post this. Long story short, I've had hysterectomy August last year where ovaries, uterus and tubes were removed but cervix left behind due to deep infiltration of endometriosis in rectovaginal passage and my bowel.
I've since been put on tibolone and more recently this dose has been reduced to half a tablet a day due to more endo flare ups.
Straight after my surgery I experienced extreme fatigue at times where I would get light-headed and almost feel like fainting. I've had one episode of hot flush where my vision was blurry and I felt short of breath. Lucky it was just once and then I started to take tibolone.
However due to endo flare ups with my bowel my specialist asked that we try to reduce the tibolone to half a dose per day to see how I go. All seemed fine ish except I keep getting worse with my flare ups with bowel movements. Last night however I got really bad back pain (something I struggled with before the op) and as I got up to go to the loo, I felt horrendous pain, felt sick, very hot and sick. It was really bad and at one point I fainted, all I remember is my hubby standing above me shouting my name and asking if I'm ok, I thought I was in bed but I was in my hallway on the floor. He said he heard me fall, this I do don't recall at all.
With my lightheadedness before I think it's something that my body does when not on her due to menopause. But I've never fainted before.
I'm not sure what I'm after but just thought would ask have any of you experienced something like this due to menopause while being treated for endo?
Thank you so much in advance, I'm feeling a bit lost 😞
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ChicaPixie
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Never assume that endo is the cause. Go back to you gp or medical practioner. Explain what is happening. Anemia is on of the culprist that can make people light head and faint. It is silent, meaning it has no other obvious symptoms. Medications, related to or not for endo may also cause problems, tablets for blood pressure are notorious for causing this issue. Other medications that you make take for unrelated reasons can also be to blame. Many of the "fainting" causes are not obvious. Specialists tend to be concerned with their speciality and don't thing about things outside their expertise. They are very conscous of what the do not know about other people's disaplines and will not step on anothers terratory, for this reason a general medical practictioner is the best option because they have the over view of all your medical history. They also have the power to refer you elsewhere.
A brief example of what I mean is from my own experience. I was given tablets for high blood pressure. I had excessive symptoms for every type I tried. It was only when a new gp took my case saw my high blood pressure and offered to start me on a rediculously low amount of the last on the list to try medications did I get my pressure where it should have been. Gleeful of success the doctor raised the amount to what is concidered to b a theraputic dose. The side effects flooded back. So we settled on a dose that would hardly affect a baby. But, it worked for me. So sometimes, people need to try and adapt before things go right.
Hello lovely and thank you for your reply.I completely understand and thank you for sharing your experience too. It always helps.
I've had multiple tests not long ago and sadly none of them pointed to anemia but I truly appreciate it's a silent illness that we may be not aware of. I also don't take any meds apart from my hrt at present.
I'm really glad that you were able to find a GP who would spend their time and was invested in helping you figure out the meds and the right dose so to help you in the end. Unfortunately in my case my GP has not been a part of my endo discovery or journey to the point that unfortunately for nearly 6 years I kept going back and demanding referrals only to be told it's IBS or being given pregnancy tests. In the end I had to resort to private doctor to get my diagnosis and treatment. Sadly after my hysterectomy things aren't quite there, some symptoms have gone but my bowel endo still remains and comes back. With the lowering of my hrt it felt as though this episode was a hot flush of some sort but I wasn't and I'm not sure if you could faint with these. I've never experienced this before and I've not got anyone I could ask about it in my family.
I definitely agree with you that sometimes you have to get through something to understand the right medicine or dose for your body.
Thank you so much for your response and sharing your experience. I truly appreciate it.
I've made arrangements to see my gyne specialist as soon as he can fit me in. But I'll also be fully open minded and explore other possibilities. Hopefully it was a one off but can't risk it for sure.
Thank you so much lovely, I do appreciate your words and all the points you mentioned, it's definitely hard dealing with all this as you know from your own experience I'm sure. This forum has been a huge help in so many ways so thank you for taking the time and sharing. I sure hope I'll be able to get to the point where all this is manageable.
as endo was left at hysterectomy it will have produced its own oestrogen and kept growing.
You need referring to a bsge centre to treat the endo left behind.
Tibolone is a good option for HRT but you can try other combined and continuous HRT. But would be worth checking hormone levels with endo and menopause.
Thank you so much for your response. That is certainly what I thought. Sadly the gyne I was under for the op was not really specialist in endo as such other than having stated they are able to treat it to some extent. I since have found a gyne specialist who is recognised on the bsge register, thanks to this forum. I'm hopeful he will be able to help.Thank you for the recommendation on the hrt options and also hormone levels. I'm making a list of things to discuss as soon as I get to speak with the consultant so will be sure to ask about it too. Appreciate your time to reply.
Just make sure the gynae works at an endo specialist centre and isn’t just on the bsge register - the register is just a membership organisation and they can pay to be members. They don’t need any endo knowledge. But those working at the bsge endo centres have been accredited to treat severe endo. Good luck.
Thank you so much, I didn't realise that's how easy it was for them to get on the register. Fortunately when I researched the centre closest to me my new specialist works within so that's a relief. Thank you for sharing this, another learning point for me.
Just wanted to add that what you describe with your fainting episode, the hot and sick feeling, agony and then passing out on the floor, I have experienced several times over years with my endometriosis, most recently in 2021. I broke my nose which I had done before, many years previously in the same circumstances. I also have a little scar on my chin from a previous faint. I have never touched HRT. My endometriosis is too severe. I had hysterectomy and oophorectomy 21 years ago and have had several excision surgeries to remove widespread endometriosis.
So yes I recognise your symptoms exactly. Pretty horrible. I'm sorry to hear you are suffering like this. xx
Oh my gosh I'm so sorry to read your experience too 😔. I've had this hot feeling before just few weeks after my surgery but not fainted at the time. It was a first time and so very scary as I could have hurt myself, lucky I've missed a few objects where I fell, just a few bruises on my arms and back. But it frightened me and my hubby big time. I'm so sorry you've experienced this and hurt yourself in the process. I truly appreciate you sharing it. I guess reading on here I learnt that hysterectomy doesn't solve the issue with endo and having severe endometriosis on my bowel and rectovaginal passage (which they didn't want to touch) means it's likely it's still active.
I'm seeing my specialist in a couple of weeks and I'm hoping he will be able to recommend something to help. It's truly a horrible disease.
It really is a horrible disease and I hope you don't faint again. If and it's a big if, you get any warning of a faint, lie down and stay there, even if it's on the floor. Unfortunately, when I have hurt myself, I have usually just gone straight down. I hope your specialist is supportive and able to help you. xx
Thank you so much lovely, I certainly hope it was a one off, the first time I've had the heat thing I was in bed so I guess won't know. I will definitely think of any signs and like you say be really careful. It's just so unsettling as it could have been much worse. I'm so sorry you've had to go through this. Crazy thing I don't even recall falling down. Thank you so much, I really hope they will be able to recommend something.
Thank you again for taking the time to reply, it means a lot xx
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Left my job due to surgical menopause/pelvic pain :( 
Medical menopause and HRT/vaginal estrogen 
Tibolone after Hysterectomy 
Endometriosis after a hysterectomy
Surgical menopause help
