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Endometriosis UK
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What is wrong with me??

Hi everyone,

I've been scouring forums for days trying to find answers but I'm at a loss. This is a fairly long story so apologies in advance!

5 years ago I started getting recurrent UTI'S once a month, the doctor's would give me antibiotics for a week & send me on my way. After maybe a year of this they started to get more frequent like every other week. Then the urine samples we're coming back with no infection the doctor's still just gave me antibiotics which of course didn't do anything. We done swab tests all normal, blood tests all normal eventually they reffered me to a urologist. They did an ultrasound on my kidneys all normal. They done a rigid cystoscopy all normal joy! They then gave me antibiotics & told me to take one after sex even after me persistantly telling them it wasn't related to sex. I went back again & they told me to take 1 antibiotic a day for 6 months. This done nothing by this point the pain is weekly but I've worked out if i sit on a hot water bottle the pain goes in a couple of hours. So I gave up with the doctors & learnt to live with the pain.

Fast forward to 2019 the pain has escalated & I now have the following symptoms:

Burning urine

Constant need to urinate

Lower back pain

Daily headaches

Pelvic pain belly button to opening of vagina like my organs are being pulled down

Blood in my urine everyday

Pain during sex

So I had my nexplanon implant taken out which I have had for 7 years thinking maybe it's that. The pain dissapeared for 2 weeks wahoo! I started taking loestrin. The pain came back with a vengence i can't walk the pain is so severe i can literally sit on the toilet for hours with just dribbles of urine coming out. So I hightailed it to the doctor's. They gave me antibiotics & signed me off work. Antibiotics didn't touch it & the urine sample came back normal apart from the fact there's blood in the urine. Blood tests normal, swab tests normal. Doctor is confused! So I've been referred to a gynecologist & booked in for an ultrasound on the cervix/womb area. They've signed me off work till the 4th March & given me co-codamol to take. The gp said it could possibly be endometriosis but she's not sure. I'm awaiting results of a smear test. I'm 25 been with my husband for 7 years & live in the UK

Has anybody been through anything like this?? I feel like a crazy person because every test is normal :( I also feel super guilty for not being at work as some of the day I'm fine & other times I can't move. Just knowing I'm not alone would be a great help it's really starting to affect my mental health :(

Thank you if you took the time to read all this!!

38 Replies
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Hey! I was constantly given the “everything’s normal” after all the tests I’ve had and now Im having a laparoscopy when I’m not sure yet but it’s all good, I really get where your coming from with it effecting your mental health my issues are taking it’s toll on me too☹️

I’d just keep trying at the doctors push for more to be done things that will be more effective that’s what I had to do took me a while but I go there in the end!

You aren’t alone,

You’ve got this!!

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Hey Thank you for replying! It's a relief to not be the only one getting normal tests all the time 🙈 have you been off work during this? I think the being unable to work is stressing me more than anything else the doctor's keep signing me off. I've got a gyne appointment on the 8th March & should have an ultrasound in the next 2 weeks so hopefully will start getting somewhere. Good luck with your lap! Hopefully the appointment comes through soon! The waiting is the worst!!

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I’m the exact same last year I’m not even kidding I swear I had like 30 urine infections some showing on the test some not and now I have the most horrendous kidney pain on some occasions! Doctors don’t seem concerned, spoke with gynae as mine touches in urology again not concerned had ultrasounds, blood tests, swabs and a cystoscopy all of which normal. I have just been diagnosed with endo on the bowel so all I can say is keep pushing you know your own body x

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This happened to me. I also have diagnosed endometriosis so assumed it was my symptoms getting worse. I feel incredibly fortunate to have come across “hypertonic pelvic floor” online so i went to a physiotherapist who specialises in pelvic floor and women’s health. I have had two sessions and all my bladder issues - frequent urination, bladder spasms etc - have nearly gone! She diagnosed me with a hypertonic pelvic floor. I can’t recommend enough for you to find a pelvic floor physio who could help you. It’s saved my sanity. Good luck.

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I have this! If you could please keep us informed how you go about solving this I would be SO GRATEFUL. Please do not stress about work, health comes first. Always!

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Did you try pelvic floor physio? I’m curious to know if it has or hasn’t worked for other people.

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No but I am going to look into this asap. As part of my endo route also. Thanks so much for sharing

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I think you have interstitial cystitis! A lot of women with endo have this. Do a quick google search to see then go from there.

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And endo on the bladder could cause issues. Some endo spots are different colors. So if a dr looks in the bladder, not knowing what endo could look like, they could miss the endo in the bladder. But endo could also be on the outside of the bladder so cystoscopy could come back saying negative endo, but it’s really in the outside.

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Thank you so so much I just looked into interstitial cystitis & that sounds so familiar so I'm going to ring my gp tomorrow & mention it!!

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Yeah! And if one dr doesn’t listen, keep going to different ones!

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I can't help you but your post made me think of my daughter who I am sure has endometriosis but is being treated for everything but! She has the recurrent 'uti infections' with no infection present but the drs don't prescribe anything. She gets a strange burning feeling (not when she goes to the loo but she says she feels like it's on her skin down there) she constantly goes to the toilet and regardless of whether it's a trickle or a 'proper' wee she feels like she hasn't fully gone. She says it feels constantly like she's 'holding it in'.

She also has described the pulling pains and said once that she felt like everything in there was being twisted and has passed out on a couple of occasions from it.

As a result of this and other symptoms she hasn't really left the house for two years!

I definitely feel your frustration and hope you get some answers soon xxx

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I am by no means a doctor but this sounds exactly like endometriosis, can you see a specialist?

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I second Jacqueline. Your daughter may have endo on the bladder. I have a pulling sensation when I go pee too. Also look out for interstitial cystitis

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Your poor daughter I really feel for her! Yes it feels like the skin is on fire like a constant burn. You need to push to see a specialist I changed doctors because mine wasn't listening & finally I've been referred to a gynecologist when I broke down to my gp because the pain was so awful. I'm terrified of having to leave my job & just be at home all the time it must be so horrible for her :( I'd try & get a gp appointment tomorrow & just really put your foot down & say you've had enough & want to see a specialist if they still won't try changing gp xxx

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I had these symptoms (frequency, burning) on and off before my surgical laparoscopy and for 3-4 months after surgery. I have had Uti in past and I have to say that the symptoms felt the same but all urine tests came back negative. Surgery indicated I had endo basically everywhere, bowel, bladder etc. I think before the surgery it was irritating my bladder and after the surgery left it irritated for a few months, I think between the catheter and the surgery it needed to heal. No symptoms in the last year and half. I didn’t have blood in my urine though. Also I found that when I was off the pill the symptoms seemed to get worse, not sure if it’s related but when I’d go back on the pill I didn’t get them as often. I hope you get sorted, I know exactly what it’s like. Keep pushing for tests and you’ll get through it.

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I can understand how that feels. I just want to say that you have all of my support. You can make it through. Just keep your hopes high. Remember, you're not alone, alright? I know, I can relate, I had a similar experience. The doctors can be really insensitive at times. I hope things get better! Good luck to you.

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I agree!!! You have done so amazingly and Thank you so much for sharing - opened my eyes to so many things !

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I really highly recommend you see an endometriosis specialist and stop going back to these doctors who don't seem to be able to help

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Thank you everyone who replied! Wasn't expecting such an overwhelming response much love to each & every one of you! I'm just waiting on the gynecologist appointment on the 8th March so fingers crossed they will have some answers I'm definitely going to push for a lap to be done & ask some questions about intestinal cystitis as the symptoms of that sound very familiar! I feel much calmer knowing I'm not crazy & hopefully I will get answers soon! I will be sure to keep this updated in the hope it can help someone else in this position! Do any of you with confirmed endometriosis work full time? I'm terrified I'm not going to be able to work anymore & me & my husband are currently saving for a house so that will be a big blow :(

Take care everyone & thank you so much!

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Woah!!! What kind of doctor would prescribe antibiotics to those who have normal urine tests/negative for bacteria???? It sounds like you had interstitial cystitis all along but with all those antibiotics you were given, have developed more and more issues. You might have developed vulvodynia, judging from the symtoms. Do you wear tight underwear, tights or jeans? Have you ever had a vaginal swab done?

My advice:

1) Go to a urologist and ask if it could be interstitial cystitis.

2) Go to a pelvic floor physiotherapist and ask if that can be the problem (contracted pelvic floor).

3) Ask a GREAT gynecologist how to recognize and if it could be vulvodynia.

4) Go a SPECIALISED EXCISION GYNO and not just any "great" gyno to discuss if it could be endometriosis.

I'm in utter shock antibiotics were prescribed to you even though no infection was going on. These doctors are a threat because this is what makes antibiotics resistance develop and that is one of the biggest issues of modern medicine. I would stop seeing all doctors you have mentioned who have acted to superficially when it comes to the diagnosis.

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Agree!!!! So much with everything you said!

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Hi!

The doctor's that kept prescribing me antibiotics I no longer use & I lodged a complaint against them for the awful treatment. I'm completely immune to amoxicillin now because of how much they gave to me. My new gp is good just a little confused but she's the one who mentioned endometriosis & who finally referred me to gynecologist. I spend all my life in pyjama bottoms unless I'm at work then I wear real baggy trousers. I've had loads of swabs because they have a habit of assuming its an sti literally had one on Tuesday that came back normal. Waiting on smear tests results hopefully they will come this week to rule out cervixal cancer because all the symptoms line up to that as well as endometriosis or interstitial cystitis. My first gynecologist appointment is on the 8th & I'm definitely going to question how much experience they've had with endometriosis before I let them do anything. I will ask the gyno about vulvodynia I've never heard of that before. The antibiotics thing was ridiculous when they gave me 6 months worth my mum went mental all it did was make me immune to it! Thank you :)

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The issue isn't that you're now immune to it. It's that it can make bacteria immune to it.

A doctor that prescribed antibiotics when there is no bacteria is NOT a doctor. Why didn't they mention interstitial cystitis before? That's the only thing any urologist would suggest if the test for bacteria comes back negative and I have NO IDEA why they haven't started treating you for it yet.

I am shocked at the idea that these doctors were not disbarred/lost their license to pratice.

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No idea i found out about interstitial cystitis from here the doctor's have never mentioned it. The urologist did a rigid cystoscopy that came back normal & after that I never got referred back to the urologist no follow up appointment or anything just yeah your bladder is fine here's some antibiotics bye. Horrendous luckily my new gp seems to be on the ball & hopefully the gynecologist will be decent! I'm going to ring my gp tomorrow & mention interstitial cystitis & see if I can get a urology appointment as well.

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This is the most fab response. Straight forward instructions. Thank you. I am actually writing them up as we speak. Everyone should know these first steps.

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Your definitely not alone 💜 I have similar problems to u x

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Hi Midget, I would ask you to have a look at Nancy Nook endometriosis education on Fb. It’s a wealth of knowledge. And extrapelvicNotRare Endo support group. In this group there are doctors who will answer you queries and you will have all the major issues answered!

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Hi I had the same as your a was told I have a overacting bladder that why I keep getting uti on drugs but still take then had a really bad one was told I blood and keto in my urine don't know what that means

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Pelvic floor physio will fix an overactive bladder.

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Sounds like endo to me. I was finally diagnosed when I was 31 having had it for many years, I am 71 now and still have it in the pouch of Douglas, it gives me untold pain at times. I had every test and two exploratory laporoscopys which showed nothing. The specialist sent a letter to my GP. which stated in his opinion I was just looking for attention and needed to be referred to a psychiatrist, I was devistated but luckily my GP knew me well and knew this was not the case. Went in to have a hysterectomy and there it was, operation took six hours, four blood transfusions and I lost both ovaries as well. After the Hysterectomy I had seven more ops to try and lazer it off bit by bit and also two lots of Danacrine which did nothing for the Endo but had a lot of side affects.

Keep on pushing to get something done as Endo grows like a weed if left unattended. Good luck with it.

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Keep pushing for further testing. You are your own advocate. Diagnostic laparoscope is the only true test to see what’s going on in there and if it is endometriosis. Endometriosis sometimes can be worse around your period and can be the reason for the pulling sensation on your organs. I get that too. I’ve had a number of Transvaginal Ultrasounds which never show anything and then a colonoscopy (I get bowel pain too) which came back clear. Only to be suggested after years of suffering to finally have a laparoscope done.

I also recommend the physical therapy -pelvic floor and myofascial release. Look into that. Good luck!

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Wow, what a thread of information!

All of you ladies are so courageous and brave, what we've all been through or are going through is so very hard on so many levels, it's so good to share it on here and help others. Thank Cher for all of you ♡ I think there's a march for Endo in Wales in March, if I'm well enough I plan on going and being loud, like one of you great women said, we are our own advocates for this disease, let's make some noise and be heard!!

And like the others said, it's all about the right consultant/doctor, a specialist doctor at a specialist centre, they're the only ones who will truly know and have seen your kind of suffering.

Good luck, thank goodness for women, aren't they just bloody marvellous xxx

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Hi!

I'm a bit late onto this thread but I had to say something as this sounds exactly like me! I've had the same issues with what feels like recurrent utis but with all tests coming back clear. My gp has put me on medication for overactive bladder and I think they've helped a little bit with the intensity of symptoms but I still have the same symptoms of urgency, frequent need to urinate (even if I then can't go! 😖) And a burning pain. My sister has had a lot of trouble with endo and my symptoms started suddenly after being taken off microgynon for high bp. Honestly reading what has happened to you recently terrified me a little bit and just wondering if anyone has any advice on how to get through to your GP that you are concerned without getting fobbed off with yet another useless prescription!!

All the above responses are so supportive - I'm so glad I stumbled across this community!!

Amy

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Hi Amy,

So sorry to hear that! I'm waiting for my gynecology appointment & my scan but my sick note from work runs out before then so I rang my GP today who's refused to do me a sick note because the Tests are all coming back normal & she's sent me to a & e which is ridiculous! It's the worst not being believed :( keep pushing your GP & I'd definitely mention that your sister has endo to them!!

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To anyone following this post or reading in the future. I went to the gynecologist today & he has booked me for a laprascopy there's a 6 month waiting list :( he said if it isn't endometriosis he's 99% certain it's interstitial cystitis so now we just wait for the operation 😬

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Hi,

You not alone!

Do you have constant pain 24/7?

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Hi, l feel exactly the same been off work since Feb due back on phased return after Easter, however still waiting a diagnosis. For the first few weeks l couldn’t do anything but some days l think it’s a good day but the next can’t move, l try to hoover / steam and just get so tired l can’t keep my eyes open. I’ve hardly gone anywhere other than doc/hospital appointments even though GP has said l need to keep moving but feel so guilty and am getting very teary and daily ask the question what is up with me!

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