Feeling pelvic pain everyday, GP told me ... - Endometriosis UK

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Feeling pelvic pain everyday, GP told me looks like endometriosis?

Juditd21 profile image
6 Replies

Hi! I am posting here because I'm a bit desperate. I always have had painful periods. I took the contraception pill for 4 years, which helped a lot but I stopped 3 years ago to have a break. My period has been much better since then (some pain, but I could totally handle it) but then during the first lockdown I started again with awful periods, and I once ended up in the hospital. I had an ultrasound scan that showed bulky cervix, and I have a referral to gynaecology but it looks like it will take time due the pandemic. My periods have become a nightmare, I can't manage the pain, I started having pain during the intercourse, and since last month feeling cramps everyday of the month. I am so scared because that never happened to me before. I just feel weak and dizzy, I cannot do thing I always have been doing. I am scared it could be cancer as I was positive last year with HPV, but my GP told me it looks like endometriosis.

I have started taking the minipill (I can't take the combined pill anymore for health reasons) and it's not helping either.

Are these symptoms normal? Can they just appear like this in a few months? I can't stop overthinking and I am with anxiety because I don't understand what is happening to me and I am not feeling myself.

I apologize if my spelling or grammar isn't correct, spaniard living in the UK!

Thanks in advance and wishing you a merry xmas!

6 Replies
plotments profile image
plotments

HiIt can all be very confusing when symptoms start to get out of control but endo can have very active moments and progress quickly which might explain the sudden onset of symptoms.

I know it's easier said than done but try not to overthink things

Sounds like you've got a decent GP have you mentioned your cancer concerns to them, I'm sure they will put your mind at ease.

The mini pill can take a while to work as do most hormone treatments

Have you been given any pain relief by GP?

Take care

Juditd21 profile image
Juditd21 in reply to plotments

Hi!

Yes, I did tell my GP about it and she said it's unlikely, but they will have a look just in case, so I have two referrals, one regarding endometriosis and the other one to check if there's something to be worried about. Still waiting for the dates though...

I started barely 10 days ago with the mini pill, should I be more patient then?

She prescribed me mefenamic acid, but I just take it when I cannot handle the pain.

Thanks for your message, it kind of relieves me!

plotments profile image
plotments in reply to Juditd21

HIYes much more patient at least 3 months for hormones to adjust unless your having really bad side effects then discuss it with GP

try not to waste your energy on worrying what happens happens and you'll deal with it when you get there!!!

If pain gets too bad maybe ask for something a bit stronger to take on really bad days

I hope you get seen to soon

have a lovely Christmas

Noodle1984 profile image
Noodle1984

I’m so sorry you’re dealing with all of this. It took me over 16 years to get an Endo diagnosis. You need to get an appointment with a gynecologist whatever you can do. I have heard many women hear going private for the specialist appointment but then they’ll book you through the regular health care system. I am in Canada so I can’t help you there. Here I went private because no one would listen to me, my specialist was able to refer me to the best Endo clinic in Canada and it’s covered by standard medical.

I’m so sorry you’re dealing with all of this. You need to get an appointment with a gynecologist whatever you can do. I have heard many women hear going private for the specialist appointment but then they’ll book you through the regular health care system. I am in Canada so I can’t help you there. Here I went private because no one would listen to me, my specialist was able to refer me to the best Endo clinic in Canada and it’s covered by standard medical.

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). I say this because I have a high pain tolerance so I just thought it was normal. But 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 also have 17 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.

Everyone hates this 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. Likely when you went off the pill it let your estrogen go free which is what Endo feeds on. When that happens the Endo can then grow rapidly. I think this is what happened in my case. We went off birth control to try for a baby and thought I was giving my body a well deserved “break” but instead I was feeding my Endo.

One thing to take note is that women with Endo typically produce more oestrogen (the really bad estrogen). This is the hormone that can lead to cancer. Keeping your hormones in balance is going to be key to keeping this disease at bay. Sadly they just don’t know enough about this condition. If you want to test the levels of your hormones I highly recommend a test called the DUTCH test. It’s a dried urine sample that you take 5 samples over the course of 24 hours. It allows you to see what your hormones are doing throughout the day. It is a test based in the USA so I’m not sure of the logistics for you. This test was invaluable because we discovered all of my hormones (sex and adrenals) are as low as they can go which is causing some of my issues (severe cramping, hair loss, scabbing itchy scalp, acne, etc).

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! Just keep hanging in there. 💕

Juditd21 profile image
Juditd21 in reply to Noodle1984

Hi!

OMG I don't even know how to thanks all this information! I have been thinking about going to a private one as I felt ignored lots of times here, until the last call I had with my GP that she thought endo fits in my diagnosis.

This is so overwhelming, I am going to try your tips, I'm sure it will help!

I really appreciate your time and your words.

Have a nice xmas:)

Noodle1984 profile image
Noodle1984 in reply to Juditd21

The biggest thing to take away is that you know your body better than any doctor. If it doesn’t feel right, it probably isn’t. Our age group is the most under diagnosed because we are fobbed off as woman. Back in the day women were thought as being hysterical 🙄.

My bestie is a spoonie and I told her that our medical system just isn’t designed for people like us. There is no help for chronic conditions because there hasn’t been enough research into it. It’s sad to think that 60% of woman have an autoimmune condition now a days.

I found having an advocate with me at my appointments really helped. Sending you lots of love. I hope you were able to have an okay Christmas. 💕

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