Just looking for advice..

[MiaW1]

Hi everyone! I've posted a few times now about my journey - I am not diagnosed with endo but have had ongoing lower abdominal pain and tenderness, along with other symptoms, for 7 months now. I have just had my follow up appointment with my gastroenterologist today who insisted it is just IBS. I have been prescribed a 10mg dose of the antidepressant Amitriptyline because he said this will help reduce the sensitivity of the bowel. I was told if this doesn't help then I need to see my GP to increase the dose to 20 or 30mg.

I am going to see a private gynaecologist next Wednesday because I'm not happy with this diagnosis. The gastroenterologist said it's IBS and there's not much more they can do and it may just disappear within the next few months/year. I appreciate all the tests gastro have ordered, however, they are now set on the fact it is IBS and have not considered other routes such as gynaecology.

I was wondering if anyone has been prescribed Amitriptyline for their pain and whether it has helped? I'm worried about taking these antidepressants as I am only 19 and I'm anxious as to whether they will have any negative side effects. Any advice would be greatly appreciated

[Boodie]

Hi there, have you been texted for infections down below not just stds but other infection? Do you have any issues with your periods? Do you have any discharge? I was diagnosed with pelvic inflammatory disease in dec 2015 by a a vaginal scan. They found fluid on my fallopian tube and I had 2 laps to diagnose PID. x

[MiaW1 in reply to Boodie]

No I haven't been tested for anything other than IBD which has all come back clear. I am on the Depo Provera injection and have been for almost 2 years so I do not have any periods. I went on this because of my terrible periods before hand. However, I do have irregular spotting. On my last injection I was spotting everyday for about 2 months. No unusual discharge just random spotting x

[Boodie in reply to MiaW1]

It would be worth getting some swabs done and a scan to check your ovaries and uterus. They would only see your fallopian tubes on the scan if they had fluid in them. I had very bad periods with vomiting and horrendous cramps. It has left me with infertility having PID. I would need ivf to conceive. x

[MiaW1 in reply to Boodie]

I have had two pelvic ultrasounds but they have both come back clear my cramps used to be terrible but luckily the injection stopped my periods x

[Boodie in reply to MiaW1]

I was on prostap last year only had 3 shots and decided yo then see wgatvgappens. Big mistake I bled for months 14 weeks after my last shot and ended up on prostap again but this time I got bad side effects. I am now on cerazette but it is causing me more pelvic pain. Doc has give me ieal provera to try but not started it yet x

[MiaW1 in reply to Boodie]

Sorry to hear you are in pain and I hope the Provera helps some what . I just hope I can get to the bottom of what's going on xx

[Chidders]

Yes i have been prescibed Amitriptyline as was having pain/frequency when peeing and it really helped, so i eventually stopped taking it. My Specialist also said i could take it for IBS and pain in bowels as works in the same way. I understand your worries but it is was quite small dosage. Hope you can find out what is causing your problems.

[MiaW1 in reply to Chidders]

Thanks so much and Thankyou for your reply. Glad it helped you and hopefully will help me too x

[ThaliaThalia]

Have you had a laparoscopy to rule out endometriosis? I ask because I know how easily it gets misdiagnosed. I was told for years that my symptoms were gastro-related. Even years later at gynae consultant level, I was told that my symptoms couldn’t be endo or cysts. Lo and behold, a laparoscopy confirmed presence of both.

[MiaW1 in reply to ThaliaThalia]

No I have not had a laparoscopy. I just keep being told IBS but I'm in pain everyday. I am hoping I get somewhere with the specialist gyne. Sorry to hear you were misdiagnosed, it is so frustrating. Thankyou for your reply x

[weekari in reply to MiaW1]

I've had the same experience of diagnosed with IBS and chronic fatigue. I was late referred to orthopaedics for chronic hip & back pain and am MRI found severe endo. I'd actually also been referred to gynae and had a laporoscopy 2 years ago that ruled out endo so if you do see a gynae and they're questioning endo (which would seem sensible given your symptoms) make sure they have experience in endo. There are specialist endo centres throughout the county of you do get diagnosed.

They're are lots of things that can help with symptoms though so even without a diagnosis, you might benefit from trying them out. Eg mindfulness meditation, acupuncture and a change in diet (there's the FODMAP diet for IBS, that didn't help me but I'm now trying an 'endo friendly' diet which is vegan, gluten, soy, refined sugar free and free from processed foods.) I also see a chiropractor for my hip & back pain which helps me so much. I'm not suggesting you do all this at once but there are lots of alternative things you can get huge benefit from without a Dr... It's just a bit of exploring and finding what works for you. The medics can only offer so much.

Also, do you use NSAIDs like ibuprofen? They're not got for your stomach and can create a lot of issues with long term use.

I hope you get some relief from your issues soon. X

[MiaW1 in reply to weekari]

The private gynaecologist I'm seeing does have a particular interest in endo so I'm hoping they can provide me with some help and next steps of action. I have just started the 10mg Amitriptyline last night and this morning I feel worse. I am so tired and feel like a zombie. I shall definitely consider some of them options to help with my symptoms. At the moment I feel like I've just been prescribed these tablets to mask my pain when the root of the problem hasn't actually been discovered. I use paracetamol but I find it does not work. I was given dihydrocodiene in A&E a few weeks ago which seems to be the only thing helping relieve the pain. Thankyou so much for your advice xx

[weekari in reply to MiaW1]

I also meant to add... When they thought my hip & back pain was joint related, I was prescribed a low dose of amatryptaline. It's quite a common thing for nerve type pain. It's actually not that commonly used as an antidepressant anymore and when it's used as an antidepressant it's a much higher dose. Like you, I took it one night and was super groggy the following day. I think it can be a few weeks before the grogginess reduces and you get the benefits.

I don't want to alarm you as I know you've a lot going on but I think it's important to have all the info... But long term use has been linked to dementia. If it gives you a better quality of life, maybe its worth the risk.

Because I didn't know the source of my pain I decided to stop taking it and that's when I started looking into alternative things.

[MiaW1 in reply to weekari]

Yes I'm hoping the grogginess does reduce. I felt like I was really hungover this morning! Although the pain seems to have subsided in my legs and back. Thankyou for your advice. Very interesting about the dementia and I shall deffo take that into consideration as I don't ideally want to be on these long term xx

[ThaliaThalia in reply to MiaW1]

Please do mention endometriosis to the gynae. You really need to spell it out for them - they can be quite useless. If your symptoms get worse around your period, it can be a sign.

Instead of taking an anti-depressant, have you considered trying the endometriosis diet? Some of the symptoms of endo mimic IBS (bloating, pain, etc). The endometriosis diet reduces inflammation and can help hugely in reducing and eliminating endo pain. You can access free diet info at the Endo-Resolved website. A good-quality fish oil can also help reduce inflammation. It’s far better for your body than a pill.

The endo would still need to be investigated as you don’t want it to spread. The diet can make it a zillion times easier to live with. It can take 3-6 months for the diet to take full effect.

Hope this helps! Good luck. x

[MiaW1 in reply to ThaliaThalia]

Thankyou for your reply. I am going to really emphasise how much this pain has impacted my life. It may well be IBS but I think I need to consider all avenues, in this case gynae, before I 100% say it's IBS. Unfortunately because I'm on the depo I no longer have a period so I cannot discover if my pain is worse during my period. I am going to look at the endo diet and the website you have provided. Thankyou so much for your help! Greatly appreciated xx

[Mamaabc]

I have taken amitryptaline and nortriptyline and the only side effects I have are dry mouth and some weight gain. I take ot for migraines though abd don’t think it would help for endo pain.

[MiaW1 in reply to Mamaabc]

Thankyou for your response. I've been told by gastro to take one a month and I'm hoping it will take away my terrible back pain x

[Mamaabc in reply to MiaW1]

That's odd, it is usually preventative so you take every day to get the effect of it. But maybe there is a reason he said only once a month?

[MiaW1 in reply to Mamaabc]

So sorry - typo error! One a day for a month to see how I get on x

[weekari in reply to MiaW1]

Is useful for nerve pain so if endo is causing that, which it seems to be in my case, amatryptaline could be helpful.

[MiaW1 in reply to weekari]

Ah I see. Can it help with the abdominal pain and tenderness? Or if it's endo does the abdominal pain never really go x

[LolaLo3]

Hi , I’m on amitriptyline for leg pain, I have recently been diagnosed with stage 4 endo finding it hard to accept and dealing with all the symptom’s I’m 5 weeks post op, I have a lot of endo symptoms so wasn’t surprised when they told me I had endometriosis I was jus didn’t expect it to be stage 4! My leg pain started a few days before Xmas I had put it down to being busy and walking a lot in the run up to xmas , xmas day itself I could not walk at all on it , I had went to a&e Boxing Day and was told it was siataca I wasn’t prescribed anything, as I was a lot of pain meds for endo , as soon as my gp re opened after xmas I spoke to my gp I was on gabapentin so they took me off that and replaced it with amitriptyline a few days later my leg pain was gone! So it’s work well for me! When I ran out of my tablets I had to wto get my prescription stupidly I left it too late , to get my repeat prescription the 3 rd day I missed my amitriptyline my leg pain started again I had awful withdrawn side affects I then called my gp and was given my prescription a day later bk in amitriptyline my leg pain was gone.. I also have it for my bowel as my bowel is covered in endo and also stuck to my left ovary so it helps for that aswell , it’s a really good drug but it’s very addictive that’s the only down side! I did have a good think if this was the right drug for me because of the side affects and with it being addictive but it’s the only one that has helped me .. hope this helps a bit! Have a good chat to your gp about it I did and myself and my gp and my endo specialist all agreed this was the best one for me 😊xx

[MiaW1 in reply to LolaLo3]

Thankyou so so much for your reply and your journey. My leg and back pain is terrible and wakes me up. It's so terrible in the mornings but throughout the day gets a little better. I think my body doesn't like laying flat! I have abdominal tenderness which feels like I've been punched or someone is sat on me - do you think the medication will help this? Or does the abdominal pain not really go if it's endo? Xx

[LolaLo3 in reply to MiaW1]

It more for nerve pain the amitriptyline drug , I am on other tablets for endo pain , so I’m not sure amitriptyline will work for your abdominal pain, I’m on 2 paracetamol , tramadol , diclofenic and amitriptyline 4 x a day but 3x for amitriptyline ..

amitriptyline makes you very sleepy aswell a lot of pro’s and con’s to amitriptyline, defo have a chat with your gp and they should go over all your symptoms and give u the best medication for you... or when your at gynae app.. I would ask what painkiller’s would be best with your symptoms, defo push for a laparoscopy it’s only a laparoscopy can diagnose endometriosis.. xx

[MiaW1 in reply to LolaLo3]

Yes feeling sleepy today. I will definitely talk with the gynae about all my symptoms. He may say deffo sounds like IBS or could be endo. Hope I get some answers soon and if gynae considers it could be gynae I will push for the laparoscopy. Thankyou xx