Where to go next?

Hi, firstly a slight intro - I'm 20 years old (nearly 21) and in my third year of uni studying Psychology and currently doing my dissertation. I have been suffering with Endo for around 6 years. I've been on multiple pills (from combined to progesterone only, last one was Cerezette), Depo injection for 3 months, and finally the Mirena coil, which I've had in for nearly 18 months. In the past I've also used Amitriptyline to help manage the pain. I've been to pain management and currently have and use a Tens machine, self acupuncture, mindfulness meditation, exercise 3 times a week, and stick to the Endo diet (no gluten, dairy, wheat, eggs, alcohol, additives and preservatives, fast food etc. I'm basically vegan but I still eat fish). I also take various painkillers when I need them depending on the pain. Varying from just paracetamol and ibuprofen to prescription co-codamol and mefanmic acid or dihydrocodeine and naproxen when it's really bad. However, it feels like none really touch it, just the stronger the painkiller the more it knocks me out so I can go for a nap and be unconscious so I don't feel the pain.

Despite all of this, I have gained nearly 2 stone in about a year, even though I exercise regularly and eat well, and it won't budge. I've been on the endo diet for just over a month (no bread or dairy being the biggest things) and I have not lost a single pound! My skin is terrible (has been since I started the Mirena but I thought it would settle down) and I get spots constantly, but worst of all, despite the fact that the Mirena stopped my periods and I haven't had them for over a year, I still get constant pain and I'm always so bloated. I know part of this is due to stress from uni but I really feel lost because something must be out there to help the pain? (Forewarning, TMI) On top of this, for about 8 months sex has been super painful. I used to have pain when my boyfriend inserted too deep and it hit my cervix, but now it hurts when he puts it in! No matter how relaxed I am personally, even when we use lube as well, it feels like I am super extremely tight and it hurts so much. I've been with my boyfriend over a year and I'm completely relaxed and stress free in the bedroom with him so it's not that that's the issue, and every time I feel like I'm ready and relaxed my vagina is just clamped up! (Sorry again for TMI)

I've been to pain management and they've done everything they can so I've been discharged. I now feel like the mirena coil isn't doing anything at all for me except not having periods, but mostly I didn't have them on Cerezette. I feel like I would be better trying another contraceptive but I don't know what to try. According to Gynae and Pain Management, apparently my options are Zoladex, Gabapentin or a Superior Hypogastric Block. 2 out of 3 of these cause weight gain, which I really don't want because I have a lot of trouble with my weight and self image anyway (even before endo), and it makes me really down, which worries me that I'll fall back into depression again (which I was treated for 2 years ago with Fluoxetine). I could also ask for another laparoscopy with excision surgery but currently that's not an option until I finish uni!

I know this is a long post/question and I'm sorry but if anyone has any advise, anything I could try, especially contraceptive-wise I would massively appreciate it! I've heard Yasmin is a good pill but it's combined and I've been warned to stay away from them for endo because oestrogen is the last thing we need more of! Any advice please?

Thanks in advance to anyone who responds

5 Replies

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  • Hi there, so sorry to hear you're having such a rough time of it. It really does sound like you need another lap and excision surgery. Get your gp to refer you to your local Endo centre.

    bsge.org.uk/ec-BSGE-accredi...

    It can take up to 18 months on the waiting list for a lap where I am so you would defo be finished uni by the time your surgery comes round - just ask them how long the waiting list is. The quickest would be about 3 months bringing you up to May, you can always ask that your surgery be put off a few wks to finish exams. Go for it! Pain that bad with sex can indicate pouch of Douglas Endo and deep disease so will be worth it to get rid!

    I found losing weight much easier once most of my Endo was removed, though I also lost a lot because I had nausea and difficulty eating. Try the weight watchers app (tenner a month) just to check that your calorie intake is ok. From what you've said it seems you're doing everything you can to battle this, all of the uni stress in final year can make everything flare up.

    Microgynon and prostap injections helped me. Hated the coil, made the pain worse. Tried Yasmin once and it wasn't a goer. Tramadol and paracetamol combo was good for pain, esp at night so I could sleep. I know NSAIDs are fab but be careful not to overuse as they can really damage your gut and cause even more problems/pain.

    As for the skin - oxytetracycline could be an option jf you ask your gp. Freederm gel is good and I use Lancôme products esp the toner (try the one with alcohol as can be good for spots, if too sensitive the alcohol free one is good too).

    Good luck with everything xx

  • Hi, thank you so much for your reply it was really helpful!

    I've had a look where my nearest hospital is and it's actually the one I was at already who did my most recent lap (September 2014), but they gave me diathermy to get rid of the endo, rather than excision! I didn't even know that website existed, so thank you, hopefully now I'll find one that does excision surgery for after I finish uni.

    That is good to hear although I'm sorry you felt so terrible! I have the fitbit app so I'll start using to to log my food and see how I get on!

    I have an appointment at the GP to be re-referred to Gynae today so hopefully I'll be able to discuss some options. Always good to know how others felt with certain things though! I've heard such mixed reviews of the coil and Yasmin to be honest, but I just know the coil is not working for me! I will be careful with painkillers and NSAIDs though! I have been warned a lot, and only take the stronger ones when I can no longer deal with the pain (in combo with the dihydrocodeine to knock me out and let me sleep!)

    I'll ask about the oxytetracycline today, hopefully the GP will help me out! I have the freederm gel and it doesn't seem to work for me but I'll look into Lancome!

    Thanks for your reply! it's a big help!

    All the best xx

  • I don't know about the coil as not tried it. But your on endo diet like me, sound strict with it so you should definitely be losing weight. (I've lost 3stone) in 8 months.

    So that means med or coil is weight gain issue.

    You didn't mention an Mri scan which can be used to diagnose endo and is less evasive than a lap.

    don't make the mistake I did of not having Mri first.

    As they can diagnose endo by lap but if it's deep they'll just close you up and THEN send you for Mri. Then another op to remove it. (Long way round)

    Definitely request Mri then can go from there. I waited 18 weeks for lap pre op to come through. Then 3 weeks for op date. So nearly 4 months and apprently that's quick!

    Uni needs to take a back seat as your health is more important. I put it off for my career and I'm now needing bowel resection as I left it to attach everywhere inside.

    not trying scare you but don't want you to be worse in the long run.

    speak to your lecturer IF you get a op date, they should give you extended dates on course work and be flexible.

    Pills will just mask syptoms best attack it head on.

    Welcome to the forum it's a god send xxxx

  • Hi there, thanks for your reply!

    I feel like it too. Funnily enough, my mum had the coil for years and when she had it taken out she lost a lot of weight, but when she had it put back in she regained the weight! So I definitely thin it's playing a big role.

    I have had a lap (September 2014) to confirm and treat endo, so no need for another diagnosis. I just think I need excision surgery rather than diathermy which is what they did then.

    I understand that but I feel with 3 months left of Uni I need to try and make it through and try and sort something for directly after I finish!

    Thank you for your advice, i much appreciate it!

    Good luck with everything in the future and all the best xx

  • Fab you could ask to get referred now we and it'll fall just after unis finishes save waiting in pain/ill lb afterwards.

    good luck hun. Pop on here with any Q's these ladies have a wealth of knowledge xxx

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