How can I get Drs to take me seriously?

Sorry this isn't wedding related, but i thought a large collection of women might be able to help me out on this one. 

Back in July i started getting a pain in my lower right abdomen/pelvis area, that felt a bit like a constant stitch or period pain, but only in that one spot. If i pressed in, it was agony. After a few weeks i went to the Drs, and since July ive been back an forth, had blood tests, stool samples, internal ultrasound, and nothing has shown up. 

Its still always there, some days its not as bad as others, but some days its so bad i can barely extend my leg because of the pain radiating through. 

My Dr has said they cant do anything unless it gets worse, but im so so anxious it could be something like endometriosis and they just arent looking at all the options.

We want to start a family in a few years and i just dont want to be screwed over because a Dr didnt do their job. 

Ive not got any kids and not had surgery in that area. Does anyone have anyyyy similar experiences or advice for what i can do to actually make sure (or get the Drs to make sure) whatever it is it isnt going to cause more damage if left? 

 

( i know no one can diagnose - i just feel like no one professional is willing to help so i feel like i need to be armed with info)

 

Posts

  • MrsTwizbeMrsTwizbe Posts: 3,352 New bride

    The good news is that anything like endo would likely have shown up in the ultrasound (or at least shown enough to warrant a surgical investigation)

    Is the pain on the bone or on the soft tissue?

    The only thing you can do is keep pushing for more tests, however at some point they will run out of tests to do. Modern medicine is amazing, but there is still so much that we don't know about the human body.

     

    Try not to worry about the fertility side of things. I have friends with endo who got pregnant really quickly as well as ones for whom it took a while (all natural pregnancies though) With fertility, you have no idea what hand you will be dealt until you try. And don't forget you are only one half of the equation when it comes to baby making.

  • Thank you! thats really put my mind at ease, i was worried it was something a scan wouldnt show, and i know its stupid but i just didnt want to push it to the back of my mind and suffer for it later.

    The pain is in the soft tissue, a few inches along from the top of my hip bone. I guess i will just have to find a way to live with it, but its gutting to think it may always be unexplained. Hopefully itll go before long, its been a tiring 6 months dealing with it, and its had a huge impact on my daily life :(

  • Sorry to hear you’ve been suffering, particularly if it’s been affecting your daily life. I had something similar as I had chronic period type pains at any time during the month and I went for various tests and they couldn’t find what was wrong.

    I found that changing my diet (which wasn’t bad to begin with) really helped alleviate the pain. In particular eating very little processed food, cutting down the amount of red meat (I mainly eat chicken and fish now) and reducing the amount of rich foods really helped improve my symptoms.Thankfully chocolate doesnt seem to affect me! Also not missing any meals as I noticed if I didn’t eat breakfast I would then suffer. 

  • RachieLil wrote (see post):

    Sorry to hear you’ve been suffering, particularly if it’s been affecting your daily life. I had something similar as I had chronic period type pains at any time during the month and I went for various tests and they couldn’t find what was wrong.

    I found that changing my diet (which wasn’t bad to begin with) really helped alleviate the pain. In particular eating very little processed food, cutting down the amount of red meat (I mainly eat chicken and fish now) and reducing the amount of rich foods really helped improve my symptoms.Thankfully chocolate doesnt seem to affect me! Also not missing any meals as I noticed if I didn’t eat breakfast I would then suffer. 

    Thank you for sharing your experience! I think looking into my diet is probably going to have to be my next step, but it seems so daunting. I hope red meat isnt a trigger for me, i have spag bol like 3 times a week haha. 

    Was it just trial and error of figuring out what foods it was? 

  • Yes unfortunately it was a bit of trial and error. There are article/websites which set out foods which are considered to be anti-inflammatory etc which will hopefully give you a bit of guidance.

    We were eating quite a bit of mince when I was suffering really badly so have cut this down to once every couple of weeks and tend to use pork instead of beef mince but it might be different for you. Good luck. 

  • MrsTwizbeMrsTwizbe Posts: 3,352 New bride

    Might be worth you reading The Period Repair Manual. It is a great book and she lists in there the foods that might be inflammatory that you can trial.

  • thank you both for the recommendations, ill look into it now 

  • MrsCToBeeMrsCToBee Posts: 2,949 New bride

    Have you considered that it might be a small hernia rather than a reproductive issue?

  • MrsCToBee wrote (see post):

    Have you considered that it might be a small hernia rather than a reproductive issue?

    Yeah it is another consideration, but they (currently) wont offer me another/different scan unless it gets worse, so im not sure how to approach it or *know* until that point really. 

    Im just trying to do anything i can and look down all avenues. 

  • MrsCToBeeMrsCToBee Posts: 2,949 New bride

    Have you thought about getting private health insurance?

  • MrsGtoBMrsGtoB Posts: 712 New bride

    Endo wouldn't always show on an ultrasound mine never did. I had to have laparoscopys. 

    Do you have any other symptoms though that make you think endo?

    I would try and stay positive that nothing serious has shown up. Could it be IBS? Maybe keep a food diary and see if there are any triggers? 

    X

  • I cant afford private health cover, its just too much and im paycheck to paycheck as it is with saving for the wedding. 

    I think its the fact it can be hard to diagnose, and a lot of the symptoms i have had for years bar the pain, but theyve always been attributed to something else. When i was 15 i had to start on the pill because my periods were so heavy and painful id faint, or end up not being able to get up in the mornings because of the cramps. Ive been on it 12 years non stop since then because it fixed that issue but i dont actually know what theyre naturally like anymore. 

    Ive been keeping a food diary for the last 3 months but so far no luck, the only real trigger i find is stress and tension, but it still doesnt go away when im relaxed, it just means the pains worse when that happens. 

    Im trying some IBS relief tablets from today for a few weeks to see if it helps, and im going to start eliminating things one by one just to see, but ive tried the usual peppermint capsules and they did nothing (other than give me reflux!) 

  • MrsCToBeeMrsCToBee Posts: 2,949 New bride

    I had similar periods and was recently diagnosed with PCOS. Interestingly, you can be diagnosed without actually having any cysts if you have several other symptoms. My ultrasound showed no cysts but I was still diagnosed with PCOS due to other symptoms, and the fact I did have a small cyst on my ovary when pregnant.

  • MrsTwizbeMrsTwizbe Posts: 3,352 New bride

    Just want to say, the pill hasn't fixed the issue you had with your periods. It just masked it. The Period Repair Manual will give more information on this.

    A lot of women have heavy painful periods in their teens which get better as they get older - mine did. I was like you, almost passing out from the pain and they were so heavy. They are still heavy, but no where near as painful.

     

  • I couldn’t work out one thing in particular that triggers my pain but changing my overall diet helped a lot. Rather than eliminating one thing at a time you might be better eliminating all potential inflammatory foods and have a period without and if your symptoms improve you could then look to reintroduce things back in one at a time to see if this causes any symptoms and then you’ll know to avoid that, although sometimes our bodies can still tolerate in small amounts.

  • Thanks ladies, lots for me to look into there! Im looking into another form of contraception at the moment, as we want to be starting a family in a few years and ive been getting migraines every month when i have my break from the pill, i think the hormones just arent working for me anymore. 

    i feel a lot more positive thanks to all your stories, if doesnt feel quite so overwhelming. 

  • MrsCToBeeMrsCToBee Posts: 2,949 New bride
    MrsTwizbe wrote (see post):

    Just want to say, the pill hasn't fixed the issue you had with your periods. It just masked it. The Period Repair Manual will give more information on this.

    A lot of women have heavy painful periods in their teens which get better as they get older - mine did. I was like you, almost passing out from the pain and they were so heavy. They are still heavy, but no where near as painful.

    Agree, I've been off the pill for several years now, and I still have heavy periods, but they aren't painful like they were in my teens. 

     

  • I just wanted to say I hope you find answers/ relief. I wish I could offer more.

    I used to get migraines very badly every month when I was on the placebo pills as well. I know this isn't encouraging (and I'm sorry), but I've been off the pill for over 3 years now and I still get them. I've had a hysterectomy and the big downside of that is I don't even now know when to expect the migraines!

    I do second whomever it was that posted considering going private insurance/ private pay if you get to the point where you need to. My OH and I have had to do this for various issues we've had before and it was worth ever cent.  Your health is invaluable, and as you say this has affected your daily life, you deserve the best life everyday.

  • JdotJJdotJ Posts: 196 New bride

    I have endo, someone above says it shows up via ultrasound, it doesnt. The only way to diagnose endometriosis is by surgery, so unless you’re at the end of your wits and in and out of hospital constantly with the pain you don’t want to go down that route as having an operation and it not being that in the end would be a horrible thing for you to have to go through. 

    I would agree with some other ladies here and pay to go private (if you can afford it) and go with a second opinion. Thats what I did after being 13 years undiagnosed and it’s the best decision I ever made. There’s no cure, but at least I know I’m not going crazy!

    Jx

  • Can I just ask if you have had a smear done recently? Listen to your body, ask for a second opinion.

  • Thanks everyone! I have looked into private but it just isnt viable at the moment, maybe after the wedding. I know my health is more important, but id rather fight a bit more first haha. 

    I had a smear a few weeks back and they said to expect the results in jan, so im going to try the digestive side of things until then, and then at least ill know if its more likely that or if it hasnt worked i can go back and just try anything else. 

     

  • MrsCToBeeMrsCToBee Posts: 2,949 New bride

    I understand, I'm just lucky that I get private healthcare with my job - sometimes it does take seeing someone new to get a result though. Maybe ask to see a different GP or change surgery if that's not an option at your current surgery.

    Like I've had dry eyes for years and a bit of double vison, finally saw a new optician and he straight away told me I had astigmatism and blepharitis, got new glasses and eyedrops and problem solved! Had been telling previous optician for years and got nowhere.

  • In my teens I had chronic cramp but after a lot of tests it turned out I'd just been given incorrect information from TWO doctors about the contraceptive pill I was taking. They said I could take it every day no breaks, they were both wrong 😩 as soon as I started taking regular breaks was I fine. So annoying that it took that long and so much effort to find something so simple!

    Anyway my only advice to you is if they say they won't run any tests, politely ask them to put a note in your file saying they decided not to send you for any tests. It won't help you get help quicker but down the line if they do find out what it is and the gp should've referred you sooner then you have a record of it and it might help speed up treatment once you have a diagnosis.

  • Bunny87Bunny87 Posts: 180

    It sounds like you could do with a second opinion, perhaps from tertiary services?

    I think it's a little unfair to say your doctor isn't taking you seriously as you've had a number of tests that sound like they have been reassuringly negative. However saying that I don't think you should have been told there is nothing more for them to do until it's worse!

    The fact that your pain is very localised and specific over a long period would probably make endometriosis more unlikely but as someone else said this would be best diagnosed on laparoscopy. A hernia could be a possibility?

    Has your doctor considered referred pain from your hip or pelvic joints? A little unusual to be unable to straighten your leg with the pain for gynaecological causes?

    You should absolutely not have to get private healthcare to be investigated further! The NHS does a fantastic job with its ever decreasing resources but perhaps your doctor has run out of suggestions? The pain is ongoing and affecting your life and causing you anxiety. I'd politely ask for a referral to tertiary services - whether that is gynaecology, surgical or other depending on what other symptoms. 

    Hope you get something sorted x

  • Thank you Awhelenqt , i do this too so maybe thats something i need to try! 

    Im going to go back and try and see another GP in the new year i think, and between now and then arm myself with any and all info i can! 

    Im pretty confident it isnt a joint thing, as the pain is a bit like a realllly bad period pain or a stitch, but the GP did actually press into the areas and found the spot where the pain was worst, it just effected me moving my leg because it had caused all the muscles in that area to seize up. 

    I've been on Buscopan for 4 days now and it doesnt seem to have made any difference, but im going to give it 2 weeks to be sure. 

     

  • Jenni8Jenni8 Posts: 3,201

    I started suffering with severe, excruciating pelvic pain which occured every 5-6 weeks, for a week at a time, in 2011. I went to the GP, had scans, tests and saw a gynaecologist over a period of 6 years.... it was horrific and I still cant beieve how unbothered everyone was by this given that I often collapsed in pain (a couple of times at work - I am a midwife on a labour ward!) and it massively effected my life when the pain was there. All possible options were considered, including digestive issues, but ruled out. FInally, I got offered a laparoscopy (the only way to diagnose endometriosis, it cant be seen on scan) but was advised to have my implant removed as a final thing to try before the lap. I was really hesitant to get it removed as I had had it for 9 years at that time, wasnt ready for a pregnancy, and wasnt keen to try another contraception method as the implant worked so well for me. In the end I got it removed in April this year and I have not suffered in the slightest bit since...... so still nothing has been diagnosed it was clearly due to the implant!

    Having been through what I have, my advice would be:

    1 - get private if you can. I waited 6 years for my problem to be resolved so you are potentially only at the very start of your journey to sort this.

    2 - stop taking your pill. Having been on contraception for so long I already didnt like that I had been pumping my body with artificial hormones since age of 18 so I decided to use natural methods of contraception (ovulation/period tracking and then using condoms at the time of ovulation). I wish I had removed my contraception sooner. Like someone said earlier, just because your periods were heavy and painful when you commenced taking it, doesnt mean they are now. So many teens struggle and then periods settle after some time.

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