I haven’t been diagnosed with endometriosis but my symptoms link directly to it. Family members have even said the same.
I am hoping someone could help me out a little? I’m on my period right now and the pain I’m experiencing is horrendous! It’s the same every month.. I have to change my tampon and pad every 5-10 minutes due to excessive heavy bleeding. Pain killers don’t work, so I try a hot bath, I was in it for a minute and half before having to force myself out of it to sit on the toilet, curl up in a ball and can’t help but cry.
I can’t move but I can’t sit still either and I feel sick with it too with a touch of diarrhoea.
I have spoken to the doctors about this before, but they just send me away. I had a scan done at the hospital and all they found was a cyst on my ovary that collapsed.
This pain goes over the scale.. What do you think I should do?
Thank you. And sorry for the very long story
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NikNak98
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Sorry you are in so much pain. If others in your family have had endo, they do think it might be hereditary.
Do go back to the GP, try to stick with one who will help. Don’t go with who may get, continuity is so important with this.
On the endo uk site there is info on consultations and a symptom template.
I’ve heard that ovarian cysts can be painful, if it’s every month with your period it’s not just that. Endo is difficult to see on scans, hardly any showed on mine compared with what was there.
Tell GP you want a gynae referral rather than ask. If you can afford to see a consultant privately, and they do NHS they can add you to their list. You get to see who you want to as well.
I have tried a hot water bottle also but that doesn’t help but I keep it there anyway. They have referred me to see a gynaecologist but am waiting for an appointment due to covid.
It is rather difficult to speak to my doctors because they can’t wait to get you out, and just keep telling you to get over it.
They haven’t prescribed me with anything, just told me to get the usual OTC medication😩
I will try to find these templates and consultations, I’m new to this site so just trying to find my way around.
Google endometriosis UK and it should come up. It really is helpful. They monitor this forum. Your GP has a responsibility to help you. If you have a phone call can you put it on speaker and have someone with you. Far less difficult to fob you off. Naproxen is stronger but the same family, you can buy a small pack from a pharmacy for period pain. If you want to avoid opiates Nefopam is an alternative. Doctors are still working, don’t let Covid excuse avoid you getting help.
Econsult works well for me, it’s an online form on the surgery website, my surgery tells people to use it rather than call.
Hello this amount of pain and having to change your pad that often is certainly not normal. Sounds like your doctor is fobbing you off as they don’t have a clue about gynaecology issues. They aren’t all like that thank goodness, please change your GP and tell them that you think you have endometriosis as all of your symptoms indicate that. Ask for further investigations. Maybe have a family member to support you when you speak to the doctor so they can also say how ill you are x
I had a feeling it wasn’t normal, I knew the pain wasn’t normal, as us females know our own bodies! Doctor is definitely fobbing me off and I’ve honestly had enough! I thought I was going to have to suffer for the rest of my life due to doctors being incompetent. I think I will try to see a private GP instead of my normal one and will definitely change to a different surgery.
Thank you so much for the help and advice, I really appreciate it!
Hello even change to a different doctor at the surgery you are at I have a female GP who is very good, also had a fantastic male one so I guess it’s your luck. You need to get a diagnosis, scans etc and medication to help you if you do have gynae problems. Even being on medication can be a struggle as it doesn’t take all the pain away, but it helps x
When an ovarian cyst burst the pain can be really horrible. But it tends to be (from my experience) something that lasts at most an HR or two and is different from month to month pain that is suspected to be Endo.
The bleeding. This amount of bleeding is not good. It could be affecting your iron levels and making you have additional symptoms that go with it as well. Your GP should be ae to prescribe you something like Mefenamic acid in an attempt to reduce the bleeding. I take both Mefenamic acid and later had Tranexamic Acid added. The Mefenamic also offers some pain relief, although not enough to tackle to pain Inexperience it was the first port of call when ibprofen and naproxen didn't touch it.
Many are prescribed Tranexamic Acid just for part of the month, based on your cycle. Mine is unpredictable and I was bleeding most of the month at times so I take it every day. It did take maybe two months of treatment to make any real difference but once this time elapsed I see a significant change in my cycles and the amount I bleed. I use to have to sit on folded up towels because I bled through proper menstral products so quickly it was a losing battle.
As for pain, in respect of additional things you can do that don't require a prescription, I use a tens machine and several microwave heat bags (I get pain in my lower back, pelvic area, lower tummy 'menstrul cramps' area, hips and upper legs). This sometimes spreads up my sides and further down my legs if excessively bad.
You are going to need to fight for yourself, and refuse to be silenced. Ask for second opinions, to be referred to gynaecology and if that gets you no where a second gynaecology referral elsewhere for a second opinion. Research endometriosis care in your area and see if you can be referred to someone with good reviews near you. The waiting is long even before the pandemic. It unfortunately isn't going to be something addressed immediately.
In the meantime ask for pain relief from your GP. Outline, in detail, what pain you are experiencing, the levels, where it is, when it occurs, how long it lasts, what you've done yourself to try and treat it. The more proof you can provide that you have done all you can and that it is preventing you from living your life 'normally' the more likely they are to intervene with some pain assistance prescription wise. Many will want to know that this is your last resort.
In respect of additional tracking, track all your symptoms no matter how big or small. Google ALL POSSIBLE endo symptoms and check which ones apply. It is different from.case to case and you may find things you are experiencing but didn't realise was a symptom. Also check low iron symptoms. If you have a family history of endo document it and make sure your GP knows about it.
It still takes an average of 7-10 years for a endo diagnosis so do not ever think you are being over the top in pushing for to be heard and receive treatment. If you need to, get PALs involved. Be aware their turn around times have also been affected by the pandemic.
I wish I had better news for you. I've hit wall after wall myself. With my own ongoing experience I suggest requesting regular copies of your medical records to make sure they are being properly documented. If you have a gp/gynaecologist who has inline patient access use it to monitor and see if they will add your own correspondence to your records (letters or symptom tracking you give them in paper form to scan on to your file). That way you have another method of making sure all you are discussing is being noted and recorded accurately.
I don't mean to scare you, simply provide you with information and tools that may help you in getting better treatment more quickly than I have experienced. I wish you so much luck. You deserve to be heard and receive proper care and treatment - don't let anyone ever try to convince you otherwise.
Right, that looks like endo. Go back go GP and tell them that you have endometriosis and need laparoscopy to confirm it. They should then refer you to gynecologist. You need to stand your ground, write down all symptoms and how long its been going on. I really hope that works and you get some help soon
Hi. So sorry to hear you're in so much pain. I have always been the same around heat when in pain. For lots of people, a hot bath and hot water bottle seem to make things better, but for me it has always made the pain unbearable. I find that during my period, when my pain is escalating I need to keep my temperature down, otherwise I'm sick. This sometimes means someone getting me a cold flannel to put on my forehead when I can't move and am feeling faint when I'm in so much agony. It does sound like endometriosis and you need to see another GP to get advise and ask to be referred to a Gynaecologist. Being fobbed off is not acceptable. I had a laparoscopy several years ago in London and my consultant explained to me that there is still so much they don't understand about endometriosis. I had mild endometriosis at the time, but atrocious symptoms. He explained that they had women coming there with severe endo, but with very few or no symptoms and the endo was only discovered because someone was trying to conceive and others like me who had mild endo, but were experiencing terrible pain. The things to look at to help yourself is your diet. I found that drinking more than 3 cups of green tea a month makes the pain dreadful and sugary foods aren't helpful. Worth keeping a diary to see if there any foods that trigger worse symptoms for you. Some people cut out gluten or grains and that can help. It would be good for you to see a Gynae though as they need to check for fibroids too. What pain meds do you have? The one thing I wish someone had told me is how to take the pain meds I was given. I often used to wait far too long to take pain killers. That is, I'd be in quite a lot of pain and took the meds then, but apparently that is not how most of them work. I now take my pain meds right at the first twinge of pain and fair better.
I really wish you well and hope you get the right help and feel better soon. I also hope you know how valuable you are as a woman! Be blessed X
I am so sorry to hear that you have experienced a high level of pain! Hot things make it worse for me too, sometimes it can be quite difficult to explain.
It’s a shame that doctors and nurses, don’t understand and know enough about Endo. 😔
The pain meds I have is Paracetamol and ibuprofen. I can’t take anything with codeine as allergic.
I am so grateful for everything! All the information, sharing your story too! I’m just very grateful. Thank you!
I hope you know you are valuable as a woman also! 💕
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I have a female GP who is very good, also had a fantastic male one so I guess it’s your luck. You need to get a diagnosis, scans etc and medication to help you if you do have gynae problems. Even being on medication can be a struggle as it doesn’t take all the pain away, but it helps x 
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