Need a hug!

Really don't have the energy to go into details, but had a lap in may where "minimal" endometriosis was diathermied in left pelvis after getting cyclical pain in my left hip/groin/leg. Pain was back within 2 weeks and followed the same pattern for a bit except now I am getting it daily presumably because I now have a mirena and don't have periods/a cycle as such.

So I requested a follow up apt. Went this afternoon. Was a bit pointless. Said basically they are not sure why I am still getting pain, and there is not much more they can do. They said that possibly they missed some or it goes deeper than they diathermied, but I get the feeling they kind of thought I was making it up. I am a medical student so I know how "chronic pain" patients are viewed by doctors, just never thought I would be one of them. :(

The only thing they suggested is more systemic progesterone contraceptives e.g depo/ mini pill, implant etc, but I really don't get on with them.

Don't really know what I expected from them really. I know how difficult endo is.

This is going to be my one and only whiny post as I have decided my only other option is just to adopt a positive attitude. I am going to try the endo diet, I usually go for more evidence based approaches so used to be a bit skeptical but it figure it is worth a go as my only other option is a choice between daily pain or the weight gain, bad skin and low mood I get with progesterone. Luckily I have got on with the mirena so far in this respect.

So having a wine and chocolate treat tonight before I get on the diet tomorrow! ;)

5 Replies

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  • Oh bless ya. Sounds like you're having a really rough time of it. Have you had a look at the Endo Angels Facebook page? There are loads of natural treatment suggestions if all the synthetic hormones are not doing the trick. Lots of hugs to ya, hope you feel better soon x

  • Oh no!

    What a nightmare. I am in the exact same position as you.

    I had the mirena coil put in to try to help stop the pain, but it made the pain worse and I had it removed (maybe yours needs taking out) I had to go to a&e though as my gyno was "unavailable"

    My doctor has said to me that there's nothing more she can do, and i just have to get on with my life the best i can! What a joke, surely this is not right.

    I've had 3 laparoscopies, 1 colonoscopy, the coil, the pill, endless tablets, different wheat free, dairy free, gluten free diets, Chinese herbs and acupuncture all with no luck. So I am going it alone.

    I take each day as it comes, some are bearable some are not! I take a concoction of tablets when I need too, I have many hot water bottles and I sleep with my electric blanket on all night. I wear maternity jeans so that it's not tight on my stomach and have tons of pyjama days. Luckily I live alone so nobody sees me!

    I try to stay positive in front of everyone but at home I often have a good cry, usually to a girly film or episode of greys anatomy. I also have the occasional treat too, a take away at weekends or some Ben and jerrys :-)

    But what I've found the most useful is talking to other sufferers. On here, Facebook, the endo website etc, i Made a lot of new friends that way and though it's not taking the physical pain away, emotionally I feel a lot better.

    Hope this helps, if you need a friend you can add me on Facebook as Hayley pepall or if you're not on there my email is hayleypepall@yahoo.com

    Ooh p.s I'm totally addicted to a Facebook game called wetopia, which helps take my mind off things and I've taking up knitting too, so everyone's Xmas present will be something knitted!! Helps to stay busy.

    Lots and lots of love xxxxx

  • Dear medicmum,

    I'm sorry to hear about your troubles. I am a Consultant gynaecologist / minimally invasive surgeon and I don't think you are making it up. Endometriosis is a very strange disease, as you know. There is no real relationship between the severity of the lesions and the severity of symptoms. I hope Mirena helps to some extend and I'd suggest you keep a pain diary and mark how bad your pain has been on a daily basis using VAS score (0 for no pain, 10 for worst pain imaginable). This will help your doctor see on paper how bad you have been.

    I would suggest that if your problem persists, ask your GP to refer you to a Consultant in your area that has a special interest in Endometriosis surgery, if your current Consultant is not an endometriosis surgeon.

    Hope you get better,

    Shaheen

    Mr. Shaheen Khazali MRCOG MSc

    Consultant Gynaecologist

    Centre for Endometriosis and Pelvic pain

    St. Peter's Hospital, Surrey

  • I'm sorry you're having such a rough time, and here's a hug from me!

    Your situation sounds like the one I had - lots of pain and trouble taking progesterone. I found that mirena combined with the diet helped a lot (mirena has definitely calmed down my cycle, and stopped the heavy bleeding, the diet seems to have helped with the pain). Good luck with the diet - it's not easy at first, but I'm finding it much better now (despite occasional cheating). I also found that keeping a diary so that I could see when I was in pain and relate it to my eating / stress / other factors was pretty helpful.

    Good luck, and here's another hug. xx

  • Thank you so much everyone for your lovely responses. Sorry I did not reply sooner but I have had a busy few days! I have been following the diet and whilst I am guessing it should be too soon I have had a definite reduction in my pain the past few days! But I have also had sore boobs and spots so may just be the mirena hormones kicking in!

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