So I have stage four endometriosis. Basically all of the organs within my pelvic area ugly together. I’ve had severe period pain since I started having periods at 11… I’m now 31. Had my first laparoscopy at 21, another at 24, which seem to really help my symptoms a lot. I was on the pill for years until 28 when I decided to come off it and I have been fine since… Until now!
I do want to have children in future and my consultant told me that the previous surgeries have subsequently reduced my account. So any further surgeries will likely cause infertility for me. So I have been trying to focus on getting pregnant naturally and then IVF if it doesn’t happen soon. Hormonal treatments would probably help my pain, but that isn’t an option for me now.
THE ISSUE AT HAND
My period pain started to progressively worsen and but now I have a new symptom, which I guess is linked to bladder. PAINFUL EXCRUCIATING URINATION 😩 It starts in the early days of my period and continues about a week afterwards.
Peeing is fine until I get to the end where my bladder is emptying. I then start to feel loads of pain in my lower stomach to the point that I have to squeeze. I despite squeezing it feels like there’s still more pee there but it won’t come out. Then I get pain in my vagina, it feels like someone stuck a hot metal rod up there! I usually have to take painkillers help the pain subside. This lasts for about 15 minutes.
I’ve been to the doctors and tested for UTIs and even given antibiotics, but it’s negative and the medicine doesn’t help.
Please tell me if any of you have been through something like this to because I’m suffering and I have no idea what to do
I could barely handle being in pain during my period, but now this is happening after, it’s unbearable!
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Cavapoochon7
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Hy same here stage 4 endo but I also have blocked tubes so only IVF is possible. I get this thing with bladder so I did a little research and a few days ago I read it can be lack of vitamin b1 any bladder unknown problems so if your GP cannot find any issue this may be it or a diabetes problem if you drink a lot of water and never seem to satisfy your thirst and then you pee a lot but I also have same issue it feels like my bladder doesn t empty only if I drink a lot of water I will pee a lot but I still feel like full bladder. Worse thing is fowler syndrom which I first read about it yesterday. So I will takvitamin b 1 for 2 weeks and see if there is improvement. I am vegetarian so I ptobably lack this vitamin. I am thinking to eat meat again atleast 2 3 times a week.
in reply to
I am also taking magnesium and iron and omega 3, it may have to do with vitamin and mineral losses trough period. So if you can tell them to do a blood test see what nutrients you lose during period and if you do please reach out and write me.
did you have any luck with the vitamins? My GP increase the amount of times I take naproxen, so I will see if that helps next week when I’m due my period again
also sorry to hear about your tubes… My left fallopian tube is swollen and has fluid, so it’s likely blocked too. Has increasing your iron and meat intake helped at all? I did cut down significantly on red meat because I read it can exacerbate the pain and my periods aren’t as heavy as they used to be. If it has made a difference for you then maybe I will do the same
Hi . Yes I am still taking B1 (which is found only in meat and fish and whole grains), magnesium, iron ( only for 4 days when I bleed) and other vitamins which I mentioned but I also started drinking cranberry juice (pure) in the mornings 30 minutes before eating, for 9 days now. Today I read you are supposed to drink it before sleep so maybe I will drink it then, but I do need to buy a new bottle . I got the idea of meat because when I was at my in- laws for 3 weeks I was eating a lot of fish and sea food and I didn't have pain after I came back from the trip neither there, neither when I got my period. I did eat fish aleast 2 times a week, and I added in my diet more vegetables. Yes, my fallopian tubes are also filled with fluid and enlarged and this prevents me from getting pregnant naturally or through IVF. I had a surgery, they unblocked the tube but it got filled with fluid shortly after. I have to remove it, now I am waiting for an appointment since almost 8 months. It did make the difference I will keep taking these vitamins especially b1 and magnesium and keep adding more fish to my meals gradually.
in reply to
Please research about B1 and the bladder relation. I saw a video where a doctor explained about the B1 vitamin controlling the bladder function but it's not in English the video. B1 is supposed to also help with anxiety by decreasing your cortisol.
Hi, I think this is a common problem related to endo. Like you, when peeing it’s ok but towards finishing & after peeing, the cramps & pains are horrendous. I feel your pain. I had a laparoscopy a year ago. I’m wondering if I need another? Or is it scar & nerve pain?
I'm not sure if this is the same as me, but I have similar pain/ symptoms when urnating. And also lower back pain. But mine is more constant, not just on my period (although it is much worse on my period). It turned out that the Endometriosis had squashed and blocked my left kidney completely. It is now very enlarged and doesn't work properly, even after having a stent put in. My bladder never fully empties now and there seems to be some kind of backflow problem, which they think is what is causing the pain.It could be that the Endometriosis is also causing you kidney/ urinary tract problems.
If you are also experiencing lower back pain, I would definitely ask them to send you for an ultrasound scan of your kidneys to see if this is the problem. And ask to have your blood checked to check your kidney function. If it has dropped, it is likely to be your kidneys. It is quite common for severe endometriosis to cause urinary problems. But make sure they don't just fob you off, the least they need to do is check your blood and probably do an ultrasound. Some problems cannot be reversed if they don't fix them in time.
While you are waiting, I have found that drinking a crazy huge amount of water helps with the sharp stabbing pain at the end of a wee. It means that you will have to pee more often, but the sharp pain isn't as severe. Also I have been drinking loads of cranberry juice and taking turmeric pills. Not sure if it is a coincidence, but going to the toilet is a bit more bearable. X
thank you! I will definitely try the cranberry and turmeric pills. I’m so sorry to hear that it has reached the point of blocking your kidneys, I did have a scan on my kidneys back in November, but the pain is significantly worse from them, so I asked my doctor to refer me again, I went online to book my slot and I saw the wait is over a year 😭
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