I’ve been trying to get a diagnosis for years. My current GP sent me to get an ultrasound, but because they saw nothing abnormal, they stopped and didn’t offer me a laparoscopy.
I’m getting so frustrated, this pain is not normal period pain like all Doctors seem to think it is. I can bearly walk when I’m on my period because the pain is so bad.
I woke up at 4am this morning in extreme pain, I took a co codamol and had my tens machine on but am still up crying in the bathroom 1.5 hours later because I just can’t move.
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Sometimes doctors think your requesting pain killers for the addiction.
I ask for non addictive pain killers so they don't stop prescribing after 6 months etc... I was given Gabapentin for a different problem but I found these also help with my menstrual pains.
If your doctor is still ignoring you I found CBD Oil 800mg max strength is amazing pain relief, but can be expensive in the long run. If you do buy CBD I'd buy it from a reputable British Standard Company, ensuring the product is safe and legit... OKCBD seem to be a good reputable provider, their products are manufactured to the highest standards.
I forgot to mention Magnesium Flakes are a great pain relief too, I put 250g in my bath or a smaller amount in my foot spa. Bathing in them is one of the the best ways to get Magnesium into your bloodstream.
You can make your own Magnesium Spray too, max dose 50% Magnesium Flakes, 50% Water, just heat the water 1st then pour the flakes in to dissolve. Pour the solution into a mist spray bottle, then spray on the areas in pain...
Its aweful and you shouldn't have to fight but you can either ask to see someone else and when you go in either take a diary or my latest thing that works extremely well is a video diary. Write all your symptoms down I know its difficult but just keep strong and believing in yourself. With regards to pain unfortunately heat is the best thing personally for me so hot water bottle heat pads baths etc but you will get there just dont fobbed off you know tour body and you have the right to see someone who actually cares 😘 i even fight for my scans etc with my gyni team unfortunately they just dont understand the pain
She said ‘I totally agree with you, there’s clearly something wrong and I’m very sorry the other doctor didn’t refer you after the scan in June. Get your bloods done ASAP, as soon as we get the results back, I’ll send them over to the gyno and get you an appointment.’
I’m so relieved to have finally spoken to a doctor who’s taken this seriously and is willing to refer me to a gyno! It’s been years and years of doctors telling me it’s totally normal to bleed excessively and to experience pain that stops you from walking on your period.
Hopefully the gyno won’t be another issue ! I’ll do as you said and keep a diary.
I’m so sorry you’re dealing with all of this, my heart breaks for you as I’ve been through it. You need to get an appointment with a gynecologist whatever you can do. I personally would try and find a private Endo gynecologist. I would highly recommend bringing someone with you to your appointment so they can advocate for you as well. For me this helps to reduce the stress.
Please don’t let this go on too long. I am 36 and was just diagnosed in February with stage 4 recto vaginal endometriosis. I have had painful periods for as long as I can remember. I even remember being a teenager (17 or 18) and when I went to emergency they gave me a pregnancy test and that was it. So I asked my doctor and she said painful periods were normal. And so began the journey of misinformation from doctors. I asked my GP about endometriosis around 6 years ago, this was after a miscarriage and continuously trying for a year to have a baby and not getting pregnant, and she laughed at me and asked what would make you think that. I also at that time was having 7-8 bowel movements a day and on my period every bowel movement I would get a sharp knife hot poker up my rectum (sorry tmi).
My surgery was horrible and hard to recover from, I almost ended up with an colostomy bag. It took 3 hours for them to remove my rectum that was pulled up and over my vagina. Please don’t let it get to where I was. I spent the money and paid to see a private doctor that was then able to refer me to the best Endo clinic in Canada which happens to be msp (our medical standard services) covered. I’ve heard a lot of members here mentioning it’s around 200-250£ for the consult.
I also have 16 other chronic conditions including adenomyosis and fibroids. I say this because I have done a ton of research on my conditions and anything along the way I thought might also be going on lol. It definitely sounds like you have Endo from everything you’re saying. My specialist said that adenomyosis is usually what causes the heavy bleeding and endometriosis is what causes severe chronic pain. The type of pain where no medication takes the edge off. When I was getting a period I would sometimes almost blackout from using the toilet.
Everyone hates this suggestion and wants a “natural” way but Endo isn’t that type of disease. I really have to stress the importance of birth control of some kind. There are 4-5 different types then each type has lots of sub brands. You don’t have to suffer, you don’t have to have a period either! I haven’t had one for over 3 years. You can only have so many surgeries before you’re left in permanent pain.
There are a few things you can do for yourself now..
1. Find a pelvic physio who specializes in pelvic pain or endo. They can give you different exercises to strengthen, help with penetration and sex pain, help with incontinence, bowel pain, etc.
2. Eliminate inflammation inducing foods. Everyone hates this one, and I’m not saying you can’t cheat here or there but be prepared for the consequences after you haven’t had it in a while lol. Eliminate sugar (added, fruit sugars are okay), dairy (coconut and almond are great alternatives, and cheese from certain parts of Europe where they haven’t bred the cows to produce an extra protein), gluten/wheat (schar brand is amazing!), and soy (produces estrogen in the body which extra isn’t good). Also try to reduce the amount of processed foods and eat as organic as you can.
3. A heating pad is your best friend. Don’t try the hot water bottle, the pressure hurts my uterus.
4. Magnesium is your second best friend. When you’re feeling cramping and you can, run a warm bath with 2 cups or Epsom salt (magnesium!) and it will help to soothe. I take 400 mg of magnesium in capsule form at night, helps with cramping and to sleep. Also amazing if you have restless leg syndrome.
5. Keep a diary of your symptoms and what you were doing when it happened or what you were eating. Maybe you can figure out some of your triggers.
6. Make sure you’re seeing an Endo specialist. Do whatever you can, don’t find one that just has a special interest. Most general gyn don’t know much about the condition. They tend to only do ablation (basically removing them top and leave the root). Instead of the gold standard of excision where they remove the whole implant. I have read so many stories of woman either coming out and they find no Endo or are still in just as much pain.
Sorry about the novel! Please feel free to pm me if you have any questions. You got this! 💕
You need to be persistent and advocare for yourself. Endometriosis in a lot of cases does not show up on ultrasound or scans (none of mine ever had, but it's there). You need to tell & tell again you want a laparoscopy done. Is it possible for you to switch drs? You know your body better than ANYONE else and if you think it's not right and you have endometriosis you need to keep fighting. I know it's hard to do especially when no one believes you and you feel like they think it's in your head, it's normal, you just want drugs etc.--- you know it's real, your in pain and something needs to be done, keep fighting and don't give up!!!! I hope everything gets better for you, don't give up.
What kind of ultrasound did you have? It is a normal vaginal and pelvic this won't pick up endo unless you have it on your ovaries. I was undiagnosed for years until I had a special ultrasound for endo done by a gynaecologist - it is called deep infiltrative ultrasound where they look at your bowel, bladder kidneys, vaginal walls, uterus and pelvic cavity. It requires a bowel prep the day before. I needed to find a good private gynaecologist to do this. The public hospital gynaecologist I saw could not offer such an ultrasound.
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