Help please!!

Hi guys,

I'm new here and writing in desperation! I apologise now as this post may be rather long!

Firstly, I'm 22 , female, have the mirena coil, and a 2 year old girl.

I have been in severe pain for 4 weeks now, my gp originally said I had a uti.. Which she treated with antibiotics, the pain got worse, so I went back to see her, and she sent me to the acute medical unit at the hospital. I was there for 2 days, had blood tests, urine tests, swabs and 3 ultrasounds. All came back clear so I was discharged.

The surgeon at the hospital told me to check for my coil whilst at home and if I could find it- go to the GUM clinic to get it checked out. So I did. Whilst at the clinic they confirmed the coil was fine, in the correct place etc, but because of the pain I was in during an internal they were going to treat me for PID. So another 2 weeks of antibiotics. With no help with the pain!

After the first week I started to notice other symptoms such as , sore boobs, extreme tiredness and mood swings, and bleeding from my bum. So I explained all of this to my gp, and she sent me straight over to the gyne Assesment unit. The doctor just sat me down, asked me a few questions, told me it could be endometriosis and sent me home- he said "if the pain gets worse in the next couple of weeks just go back to your gp" (thanks!)

Anyway, on Tuesday (yesterday) I had a review at the GUM clinic regarding my PID diagnosis, and they decided that I needed to be referred straight back to gyne because something wasn't right, so back to the gyne unit I went.

I had more internals, an internal scan which were all putting me in severe pain and tears! And still no one could but a finger on what was going on, so I got sent to the surgical ward... Where the consultant said he Wouldn't give me a ct scan for "belly ache" and that I would probably get better in a couple of weeks. At this point I broke down, because not only have I been pumping my body full of antibiotics, I cannot control the pain, and it is disrupting my family and work life, he agreed to do a laproscapy in the end but didn't sound confident he would find anything- I'm waiting for a call from the hospital today with an op date.

My question is, from your experience, do my symptoms (listed below) sound like endo?

Pelvic pain, lower abdo pain and ache , lower back ache, top leg soreness, waves of pain up the sides of stomach, extreme tiredness, difficulty walking, nausea, painful sex, painful examinations.

Sorry for the essay! I'm just scared and fed up and would love some friendly advise!!

Thanks in advance xxxxxx

17 Replies

Yes, to me your symptoms do sound like endo symptoms. If you have a laparoscopy your surgeon should be able to diagnose endometriosis if it is present in your case. Before my diagnosis I had a very painful internal exam so I sympathise very much with that! Good luck X

Thank you so much for your reply! After 4 long weeks of feeling like no one believes the pain I'm in, I'm hoping people start to realise and take me a little bit more seriously xx

I had various symptoms over the years and ended up having a lap in 2010 when the gyne explained that if it was endo then he'd like to insert a mirena as its meant to slow the regrowth black.

Endo was found, dealt with, coil inserted.

From day one, the coil just didn't feel right...after 6 months of it not settling with spotting and constant aching, the gyne suggested a three month course of zoladex. The spotting settled, but the aching continued.

I'm not sure how, but I stuck with the coil for 3 years, but I felt like I lived on painkillers and constant aching.

The day I had it was like a breathe of fresh air...the aching disappeared!!!

Would you consider having it removed to see if it makes any difference before the laparoscopy?

Thank you so much for responding! The gyne was against taking the coil out prior to any confirmed diagnosis, not sure why! Had a call from the surgeon yesterday so I think things will get moving pretty quickly x

Definitely keep on at them, otherwise they will think you were just "creating" at the time to get a reaction!!

sounds like my problems to, ur not alone I've finally got my gynecology to take notice after they found a cyst then a month on one ruptured near my ovary. I've had enough now living with the pain in seriously considering a hysterectomy.

I hope everything goes ok! I'm still

Waiting for a call back from the surgeon! I want to call them again but don't want to feel like a nuisance! I'm getting desperate now! How long have you been suffering? Xx

it must about 10 years of suffering doctors not knowing what it is tests always come back clear finally now they are taking noticed as its not just my ibs causing the pain in the pelvis. U only get somewhere if u keep complaining. They would have give me morphine to bring home when I was last in until I complained just so they can have the bed and me to continue suffering. U go girl complain it will help u to get sorted hopefully. Fingers crossed 😊 keep me posted on how u get on

Thanks! I feel so stupid and desperate but then again I am desperate! It's stopping me living the active life I enjoy! I'll keep you posted x

Hi Hun- what a fiasco you,ve been through! Is there any reason you chose a Mirena and not The Pill?? You sound like you have PID which could be aggravated by the Mirena. Ask your g.p to remove the Mirena for a while and get the PID sorted. The more you aggravate the pelvic region the more pain you will get- Safe sex for a few months if you can,t "abstain" until you feel better, ask g.p for some decent pain relief and maybe some condoms or femidoms. I sincerely hope you feel more relief in the next couple of days..

Hey! I've been cleared of P.I.D and the gyne was very against my gp removing my coil as it's possible it's keeping the worst of my endo symptoms away! I've had a bad day today with pain and sickness! Hoping it will subside tomorrow x

Yes it does I went through the same crap for 4 years I was told because I was on mirena I wouldn't have endo !! Had lap 2 July and was diagnosed with pouch of Douglas endo it has been removed but yet I'm still getting severe back pelvis pain and fatigue feeling very pissed

I hope yours goes well and you find out the cause of your issues I was made to feel like it was all in my head and I ended up just getting with it until I had a great doctor agree with me and sent me for a lap now I'm coming to terms with it and finding ways to cope I have brought a tens machine which so far I have found it helps as I can't stand pumping paracetamol all the time !

I don't know much about endo myself at the mo hoping people on here can help me and give advice

Hi - yes, your symptoms are classic for endo. The only question mark would be if they all started out of the blue 4 weeks ago. Was sex painless prior to that with no pelvic pain, leg or back pain at all? What were your periods like before having the mirena - was this for contraception or to control heavy and/or painful periods? With endo there would usually be some lead up before these symptoms. Where in the UK are you?

Hey! I've always had pain during Dec and call me stupid but I just thought it was a regular feeling.. I was put on the coil because I suffered bad/ heavy periods in the past. I've always had pains in the tops of my legs which I thought were associated with being a former dancer. I got a letter today asking me to go to clinic at the end of the month! And then will be put on a waiting list for my op.. I can't help but feel disappointed that I will have to sit there and go through all the symptoms again! I wish the surgeon I saw on Tuesday would just handle it instead of passing me on to another doctor! Xx

Sorry forgot to say I'm in Southampton!!

The combination of symptoms that should immediately raise suspicions of endo are pelvic pain, heavy, painful periods, lower back pain and painful sex. You sound to be a typical case of a young woman being given hormone treatment (mirena) to mask it only to have it progress to the pain you are now in. The progression to leg pain and blood with stools fits a picture of now likely having endo behind your uterus in places that are usually missed when having a lap in general gynaecology. Have a look at my post on the diagnostic lap, the treatment pathway and how to find a specialist centre. I strongly urge you to request a referral to a BSGE endo centre for your lap.

Thank you! x

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