Mirena coil & Laparoscopy - my current story

[Northernjsoul]

Hello all,

I'm new to this and my post is very lengthy!!! But please bare with me and read as I would truly appreciate any advice.

I'm 23 years old I have had trouble with my periods since they began at age 12, either been in immense pain or just being ill with no real explanation. I was diagnosed with Chronic UTIs when I was young, and nothing seemed to help me at all, the anti biotics would only temporarily ease my pain and swelling and afterwards it would come back with full force.

I now believe that I never had water infections at all, but it was always endometriosis.

My mother had a full blown hysterectomy when she was only 27/28 due to how extreme her endometriosis was and unfortunately there was no choice in this. She had been diagnosed with IBS for 7 years leading up to her hysterectomy.

The last couple of years my symptoms have become unbearable with pain, bleeding thick black gloop and always bleeding slightly dark brown blood, pain during sex, after sex and extreme nausea and fatigue. I also have always bled from my bottom with no explanation. Currently I have a constant pain in my left hand side of my bowel area. It is only the left hand side that I ever have pain.

I finally had an appointment with a gynaecologist last month. The appointment did not go as I'd hoped. The consultant didn't really listen to any of my symptoms, said that it sounded like IBS and that I should try the mirena coil to see if it easies the pain.

I decided that I wanted to put to sleep when I had the coil fitted as I'm not very good and will probably be too tense for it even to go in due to pass experiences. After several conversations back and forth with my consultant, she is very very against me have the coil in whilst under GA. Has anybody else experienced this?

After a few stern words, my consultant said that I should come back in to the clinic to have this discussion face to face. She said if I was going to be put under GA, I might as well have a laparoscopy as well at the same time, but again she wasn't keen on this.

Is there anyone who has experienced this with their consultant? In all honesty, I would prefer to have the laparoscopy as quickly as possible so I can get diagnosed or find out what is wrong with me. She says I am too young for this procedure, however considering my Mum had a full blown hysterectomy when she was 27 and I've had these symptoms for 10 years, I don't think I am too young.

I don't have children yet and I am very keen to be able to have them, but I'm not in the right place of my life in order to try at the moment - however I also don't want to leave it until it's too late.

Has anybody got any suggestions for my story or any similarities? I don't know what to do for the best and in all honesty, along with my constant pain I am feeling quite depressed about the whole situation.

Thank you so much for taking the time to read my story.

[Myfanwy21]

Hey firstly I'm really sorry you're going through the difficulties that so many of us seem to have to go through. It's incredibly frustrating when you finally get a referral to see someone who should be helpful and you are just shut down like that. I am 22 so totally get the whole you're too young thing! You have the right to ask to be seen by a different gynaecologist, and to be honest with your mum's history of endometriosis I think it would be sensible for you to be seen by a specialist. I think so often it depends on who you get to see and unfortunately it's a bit of a lottery.

I personally refused the mirena coil multiple times as my sister has had no end of problems with it, and frankly I wanted to confirm and remove the cause of my problems not just mask the symptoms as I have been on the pill for period pains since I was about 13 which obviously wasn't working. Gynaecologists are seemingly very keen on pushing the coil as a solution but you don't have to do anything you don't want to do, and you are absolutely within your rights to push for a laparoscopy if that is what you want. Your consultant is likely hesitant about GA because of the associated risks, however given your family history I think these should be outweighed by the horrible symptoms you are experiencing and the potential risk to fertility.

Unfortunately even the best sometimes get it wrong. I had my second lap last week for excision after having had a diagnostic lap last year - the endo nurse at my consents appointment on the Monday laughed at me when I said I hadn't mentioned bowel issues before as I didn't want to be fobbed off as IBS, and told me "you haven't got it that bad there's not much in there".. Fast forward to Thursday and I'm waking up after a 2.5 hour operation being told it was everywhere including on/around my bowel, constituting a complex case of severe endometriosis. Sometimes they don't get it right, so don't be afraid to put your foot down and demand a proper diagnosis and treatment.

I have always found I have been listened to better when I have taken someone along to the appointment with me e.g partner/sibling etc. It's rubbish that that's the case but it's worth a go. If you can't get through to this gynae, it might be a case of back to GP and asking to see a different consultant. Go in armed with a list of symptoms, a symptom diary, dates of significant events, any research you may have done, a written summary of your mum's issues, and anything else you can write down so you don't forget. Always be polite but firm, and don't let them fob you off.

Good luck!! M x

[Northernjsoul in reply to Myfanwy21]

Hello,

Thank you for your kind words I really appreciate them and they have really helped me. I am seeing the gynie one more time and if she is still as unhelpful I will push to see someone else.

i'm just worried that they are pushing the mirena coil on me to mask the issue rather than actually diagnose me! I'm sorry to hear that your sister had trouble with the coil, and I have heard other stories regarding it too so it is unsurprising. However, I'm at a loss as the pill just really doesn't agree with me!!

You are definitely right about bringing someone a long, I usually bring my Mum which is great because she has been through all this before. I brought a diary of my symptoms to my first appointment, nearly 3 months worth. She didn't even look at it so I was really gutted and stopped filling it in, but i'm going to continue now for my own benefit!

Thanks again, I really appreciate your advice. I hope you are doing okay

J

[gannb92]

Hi! I'm sorry to hear you're suffering so terribly, it's ridiculous how long it takes to get a confirmed diagnosis. I'm 25 and was diagnosed with endometriosis earlier this year, although I seem to have been extremely lucky with the consultants I've seen which I know is usually not the case with many others. I think it's ludicrous that you're too young for the procedure. Don't feel bad for putting your foot down, or even requesting a second opinion. I have to agree with the other response about being seen by a specialist, having someone who really understands the disease makes it a little easier.

I had a diagnostic lap and cystectomy back in March and am due to have an excision lap hopefully soon. Even though I've been lucky enough to see very understanding Dr's I still have been a little pushy at times, and I understand it's so frustrating when you feel as though you're not being listened to. Definitely keep pushing, and I hope you get some result soon!!

All the best x

[Northernjsoul in reply to gannb92]

Hello there, thank you for your kind words. It is such a shame that this is the case even though you have clearly got a diagnosis that you still have to be pushy!

It sounds like you are going through a lot of proceddures at the moment so I hope all goes well for you. I am just going to push for a laporosocy now rather then mask the symptoms with the coil - so I will just and be a little sterner! Haha. Hope you feel better soon. - J

[ellie_cook]

Hi, I’m so sorry to hear about all your symptoms they sound awful. I had similar symptoms and I’ve had a few appointments with some gynaecologists. The first one that I saw was very similar to your experience. However, the second gynaecologist I saw was so much more helpful and kind. I’m only 20 and I’ve been scheduled for a laparoscopy, cystoscopy and a coil fitting. In my second appointment I got so angry because I felt like no one could help and I explained this which lead me to cry. I also explained how it has been interfering with my uni work and social life. I think that if you explain how much the pain is interfering with your life they take you a lot more seriously. I would definitely recommend seeing a different gynaecologist because if you want GA for the coil and a lap you should be able to have this! Good luck and I hope everything gets sorted

[Northernjsoul in reply to ellie_cook]

Hello Ellie, thank you for reading and replying it means a lot. I think being too young must be an absolute myth, most people who have responded to me are my age or younger! I am going to push for a laporoscopy now so I agree with you, thank you very much. I know what you mean about it interfering with your life though, sometimes it literally completely takes over mine in every way, so frustrating. Maybe I will be more clearer about this with my consultant during my next appointment. Thanks again for replying and hope your surgery gives you some relief. J x

[Natalie221]

Hey so sorry to hear what your going through, I’m also 23 had lap in 2014 found a tiny piece of endo but didn’t think that was related to my pains, I have all the same symptoms u do!! Anyway after my lap I was symptom free up until January and it all started again this time a lot worse I went back to gyny to be told they didn’t think it was endo and from my last op they weren’t convinced that small amount was causing my pain even tho after I was symptom free. But I pushed for a second lap that I’m waiting for now and there also putting the coil in when I’m under because I didn’t want it when I was awake. Sorry for the long reply but your not on your own I know exactly what it’s like to be left feeling crap because no one is taking you seriously all I can say is go with your gut and hopefully you will get some answers with your laparoscopy they didn’t think I had endo 4 years ago but it was still found even if it was only small. I hope everything gets a little easier soon xxx

[Northernjsoul]

Hi Natalie, thank you for your response it's really helpful. My consultant said it was very unusual to going under for the coil but seemingly from these comments, this is not the case. It's so hard without being diagnosed yet but having all the same symptoms as somebody like you makes me believe it's deffo endo!

I guess it's a good thing that when they removed even a small bit of endo out of you it has given you some relief, hopefully the next one will too. It's scary that even a small bit can cause so much pain. Good luck and thanks again for your response, I really appreciate it x