Dazed and confused! Bit of a long one, sorry!

[KH14]

Hi everyone! So this might be a bit long winded and complicated!

I'm 22 years old, started my periods at 11 years of age and from the get go I had heavy heavy bleeding, painful trapped wind, constipation during my period and cramps. As I got older all of those problems persisted and increased in severity.

I've got a full history of GP's 'trying' to solve these issues, I've also been on and off multiple different types of pill. About five different types of the 'ordinary' pill and three different types of the 'POP' pill. Unfortunately I'm unable to continue trying different 'ordinary' pills as they can cause strokes (no other explanation for you there as GP decided that was all I needed to know) and my GP also decided that the other 'POP' pills wouldn't work for me.

When I made it absolutely clear I wasn't going to walk away without any other form of advise or assistance I was offered the Depo Provera injection as my GP believed my body could do with a rest... brilliant, a sort of solution!

I'd been having the injection for three years no problems when due to family history of osteoporosis I needed to have a DEXA bone density scan as the Depo can reduce bone density. Unfortunately I have a significantly low bone density for my age in two of my vertebra and my hips 'aren't positive news', currently awaiting more details as they got my first scan wrong! So the advise was given to come off the Depo and be given a Mirena. Anything to help my bones right? So, so wrong. Worst decision I have made. Horrendous pain during fitting and I was virtually paralysed with pain for the rest of that day and unwell for the two days following. I endured 6 weeks of bleeding and excruciating pain on the advise it would all settle down which wasn't expected as they also decided that I would be given one last Depo injection on the day of the Mirena fitting to allow my body time to adjust.

After about 5 and a half months of increasingly painful cramps, terrible mood swings and significant hair loss my body finally had enough. I was extremely poorly! I was vomiting from the pain in my pelvic area, couldn't keep liquid or solids down, constipated. GP took swabs and the results came back totally clear. My entire pelvic area was inflamed inside and out with no explanation why so I was put on some anti inflammatory tablets which also happened to make me vomit and make me even more constipated. Eventually after three days I told my GP to remove the Mirena and give me a Depo injection at the same time even though my bits and bobs were still inflamed. The relief was almost immediate. I had finished and kept down an entire meal and pint of water within two hours of having it removed.

I decided to go back and speak to my GP about everything. She openly admitted that she believes I have endometriosis and that all of my symptoms described match up. She also happened to openly admit that she could send me for an ultrasound scan but it wouldn't confirm anything and as I wasn't trying for a baby nor had I tried for a year or more previously that she wouldn't refer me for a laparoscamy (?) because it's too expensive. She told me to go back if I was still getting cramps with the Depo as it wasn't right and that was that.

I walked out of that appointment completely dazed and confused, not really realising how relaxed and unconcerned she was about my health and future.

I'm now totally confused as to what I do!? Has anyone had similar problems? How did you proceed? Shall I just wait until I'm trying for a baby in the not near future and see? Shall I push or tests?

I'd appreciate any guidance, advise... anything!

Thank you! X

ps. I'd also like to thank you for reading the essay I seem to of written!

[Moff_cat]

Hi you are entitled to a second opnion so you could try seeing a different doctor. I would go for the ultra sound as it won't show endo but will show cysts and if things are not where they are supposed to be. I paid to go private for appointments and lap, but some people have paid just for the appointment then been referred back to the nhs. If you do go private make sure you get your gp to refer you as if you don't then your gp does not have to acknowledge any findings. Good luck x

[Bexyrich]

Hi,

I am so sorry to read of what can only be described as a terrible time. You need to go and see a different gp and push to be referred to a gynecologist.

The only was of diagnosing endometriosis is with a laproscopy and this is what you need. It can be diagnosed and treated at the same time depending on the extent, some surgeons do both, other will give a dianostic lap and then decide where to go from there.

I really hope this helps you.

x

[Beau83]

Yes, get a second opinion hun!

It's terrible how blase she was about endometriosis! If she thinks it may be endo then she should be referring you for a laparoscopy to confirm this. I cannot believe she said she wouldn't because it's too expensive!! That's disgusting and I think she needs reporting for saying that. It's typical NHS, and the reason why it takes on average 8 years to disgnose endo.

You need to put your health first. If you do have endo, you don't know what damage it has already done or whether you have cysts, adhesions, whether your reproductive organs are effected. If it's left alone it will probably get worse and grow/spread and this could effect your future fertility. It's best to have a lap now and see whats going on and treat whats there rather than risking things being 10x worse later down the line.

But moreso a lap & treatment will probably make you feel so much better and improve your quality of life. Who is she to deny you that!!? So my advice is see another GP and demand to be referred to a Gynaecologist (preferably one that specialises in Endo) you can google endo specialists in your area and you are entitled to choose who/where you are referred to through NHS 'Choose & Book'.

Bets of luck- keep fighting! x

[Pentals]

Hi

I'm new to the forum, but can completely understand what you are going through, i got referred to a consultant for mine and they basically said they wouldn't do the laparoscapy as i was classed as being high risk - even though my Husband and I have been trying to concieve for 7 years, and i have suffered with terrible periods, cramps and paralysing pain through my abdomen - again like you i kind of don't really know where to go now, but am going to have to get back on the band wagon again after yesterdays events....

Keep pushing forward and insisting that you see someone and take on the advice from others above

I wish you all the luck int the world xxx

[gillyjo]

hiya, im so very to hear you are going through all this. I can entirely relate to what you are going through as I also started my period at 11 and had a horrible time. the cramps were horrific and I got shooting pains down to my knees, i was losing so much blood that i had to stay off school at the time of my period as i would bleed through my school clothes. it was really large clots every time. for years i went to the doctors and was more or less labelled a drama queen and told that every woman goes through this and that i would just have to learn to deal with it. i ended up anaemic and very underweight as i wouldn't eat much as in my childlike mind, i was trying to prevent constipation which enhanced the pain so much more. when i got to 17 i started to faint the pain was that bad. still i was the "drama queen" of the doctors surgery and still nothing was done to help me. i started getting really depressed as my periods were now every 2 weeks and so heavy that it prevented me living a normal life, i didn't go out with friends so much and was taking time off work. this went on until i was 25 and i saw a locum doctor one day and demanded a hysterectomy, i was hysterical by this point with it all, pain is bad enough without something controlling your life which has yet to be diagnosed. i think if i had a name to put to the symptoms then i would have been able to accept it more. that locum doctor was lovely, she really did start an upward curve in how i am today. within 12 weeks of seeing her i had my first gynae appointment, 12 weeks after the gynae appointment i had my first laparoscopy. where lo and behold i had endometriosis!!!!

since then i have had a further 5 laps, most of which has been laser treatment but one was to have a fallopian tube removed as it was too damaged, this was on the right side where i have the most pain. now the pain is more manageable but i do think i need the ovary out on that side but the hospital wont do it as i am only 33 with no kids.

however, i am not saying all this too scare you, im hoping that it will help. i was badly let down by doctors at my gps practice and im hoping knowing about me will give you the courage to seek more opinions from each and every doctor if you have to. don't let them make you feel you are being a drama queen like i felt. demand a referral to see a gynaecologist and if you don't get a referral tell the doctors you will report them to the gmc for neglect, write to the medical council and explain the situation. phone your local gynae unit and ask for advice as well or if its feasible go private, they will see you asap if you can do that.

also, as for the doctor saying you cant see endo on a scan, that is utter rubbish. granted there isn't much to see on a scan the like of which you get in pregnancy but for endo you are actually scanned internally (well that's what the nhs here in Dundee do anyway). they can also point out chocolate cysts caused by endo which cause pain also.

its also a good idea to be refered to your local pain clinic as they may be able to prescribe something for the pain, like you the pill doesn't agree with me and i had to stop the depo as it was making me have crazy mood swings. i refused the mirena as i didn't think putting something into my body in a place that was sore already would make things any better. the pain clinic gave me lidocaine pain patches which i wear for 12 hours a day - i only have to take co-codamol now on bad days when before it was dihydracodeine. they really have helped.

i really do hope somewhere in all this novel ive written that there is something that helps. if not then i wish you all the very best of luck getting some help. but do try standing your ground with the doctors, demand throw hissy fits, jump up and scream at them if you have to but don't let them fob you off. i would hate for you to suffer as i have.

love gill x