Advice please

[Endo_warrior01]

Hi everyone, I’m fairly new to this group and was worried about posting but I’m feeling so lost.

I am waiting on a diagnostic laparoscopy for potential endo.

Pelvic pain started around a year and a half ago. I have had an internal ultrasound which only showed a small intramural fibroid but I was told this wouldn’t be a cause of the pain. I was eventually referred to gynae who I saw at the beginning of January. They advised it could be endo and have added me to a waiting list for surgery.

The pain has become a lot worse in the last couple of weeks. A constant heavy ache and feeling of pressure with intermittent sharp stabbing pains lower abdo, lower back and down the back of my thighs. I have gone from taking paracetamol and ibuprofen as and when required to now being on regular naproxen and dihydrocodeine. I am a staff nurse and I have had to have time off work and they are not being very supportive of my phased return.

I feel physically and emotionally drained. So fatigued. Struggling with bowel symptoms too, diarrhoea in the morning and constipated by the evening (I take regular laxatives to help with constipation from the strong pain relief). Bowel movements are painful and I often bleed from the front afterwards.

I haven’t had a period for over a year as I am on continuous birth control and also have PCOS. I also bleed after sex.

With all the above my consultant has decided to expedite my surgery. I have read so many posts about them not finding anything on a lap and I worry this will happen and then will just give them more reason to not take me seriously.

I am so deflated and tired of having to convince people of how much pain I’m in. It’s like they don’t believe me. Particularly GPs it just feels like such a battle to get them to listen.

Has anyone else had these symptoms? Struggled with GPs? Or can validate the way I’m feeling right now. I feel so lost and very emotional. I’m worried my surgery won’t even show I have endo then I’ll be back to square one. I almost feel like I’m going mad and I start to wonder maybe it is all in my head !!

If anyone has any advice at all I’d be ever so grateful. Also advice regarding preparing for surgery. I’ve never had an operation before.

Best wishes and thanks in advance. Xxx

[endowarrior12]

I just had to reply as I can completely empathise with you. I work in hospital too and have had a lot of time off due to pain and it’s stressful going through absence review meetings etc. it’s so difficult to live with these symptoms on a daily basis and frustrating that it makes life much more difficult. I’m having to reduce my hours although I can’t really afford it but I don’t want to lose my job all together xx

In regards to the surgery it’s good to be prepared, there’s a great checklist on the endometriosis uk website that’s very helpful. A few examples are having some frozen meals etc prepped for when you get home, take peppermint capsules or tea to help with the pain of trapped air post op. And I’ve asked the consultant if I can record post op chat and findings on my phone as you can be feeling really groggy after surgery and might not take it all in. Things like nighties and pads for post op bleeding and lose comfortable bottoms for coming home in. Hope that’s helpful but as I say there’s a great pre surgery checklist on the endo uk website.

Always remember your pain is valid, it’s not in your head and please don’t let anyone make you feel like it is. It happens so often and it really saddens me. Well done for posting and in this forum you’ll find lots of support and more importantly you don’t feel alone. Endo is a horrible disease but here we’re all in it together. Feel free to message anytime, big hugs 💛

[Endo_warrior01 in reply to endowarrior12]

Thank you so much for your kind response. I’m sorry to hear you’re struggling with the work side of things too and I hope you’re being supported by your manager and occupational health? I am on a phased return at the moment and am even struggling doing half my usual hours. I feel pathetic but the pain and fatigue are getting the better of me.

Thanks for mentioning the surgery checklist. I will take a look.

It’s so hard to feel validated when it feels like nobody is listening. The support in this forum is great but I hate to see that so many of us are struggling with this horrid condition and not being taken seriously.

Thanks for the advice. Big hugs back💛x

[smee3life]

Hi, I just wanted to respond and second that your feelings and your pain are absolutely valid and yes, unfortunately, a lot of doctors are just a**es. The pain from not being listened to is almost an entirely separate condition for me, at this point. What you describes sounds really hard, and like you are doing your absolute best. I'm also waiting for a diagnostic lapro after years of being brushed aside despite not really being able to walk or function at times from pain. I also spend significant amounts of time convinced it might be all in my head, despite what I just described.

I'm happy to buddy up with you if you want to talk about your feelings going into the lapro - I am nervous, too, at times (others times I'm like let's do this, NOW). The stuff endowarrior12 mention is also what a friend of mine prepared me for, so I think being prepared and stuff can easy some worry. But regardless of the procedure or any of that - hey, what you are feeling and all of the hard things that come with it are real. Your reaction is normal. And this is not in your head (my biggest fear, too, is that they find nothing and it's back to square one). I remind myself that even if the lapro doesn't show what they suspect, then it's just on to the next step. Something IS wrong. It takes a great deal of persistence to get treatment for this, it seems, but let's not give up (I want to, sometimes, trust me). But we deserve to pursue health and happiness.

[Endo_warrior01 in reply to smee3life]

Hiya,

Thank you for your reply.

I totally appreciate what you mean about the pain from not being listened to. Its awful.

I’m trying to do everything I possibly can to help myself feel better. I’m sure my GP would have signed me off for another week but I wanted to get back to work for some sort of normality.

It’s bad enough not having an official diagnosis and waiting for surgery but when you’re made to feel like you’re making a big deal out nothing it just adds to it all!

You’re completely right. Being in pain all the time despite strong medication is not normal. We have to advocate for ourselves.

Thank you for your kind words.

Please feel free to message me any time.

Fingers crossed you get some answers soon. Take care. Xx

[Tiff22]

Hey,

I had my lap in December and have now been diagnosed with endo but getting to that point with the doctors was awful. I can completely sympathise with you for them not listening as I had the same. I got told it was all in my head and I just wanted to have something wrong which after a while you start to believe. Remember that nobody else knows your body or how you feel. It definitely isn’t all in your head, your symptoms are very real. It’s easier said than done but keep pushing forward to get the help that is needed.

I felt that I had to try and explain how much pain I was in to everyone and they just didn’t understand which is just exhausting and it can be lonely. I’m finding now that I’ve had my lap everyone’s like great she’ll be fine now so just prepare yourself for that potentially.

I was also worried that my lap wouldn’t show anything up as they said the ultrasound looked clear and mri was clear. But when they looked inside they found it.

Advice for the lap:

- buy baggy pjs/ nighties.

-get an oodie (i lived in mine after)

- peppermint tea to help with the bloating

- get extra pillows/long pillow to put at the side of you when you sleep. I sleep on my side but without a pillow to support my belly i could feel everything pulling.

- have someone with you for the forst few days if possible. (my husband had to help me get out of bed and onto/off the toilet.)

-Most importantly try to mentalky prepare yourself. I'd spent all that time in pain, pushing with the doctors and everyone around me, just wanting them to find what was wrong with me. Through all of that you dont prepare yourself for being diagnosed with what is a debilitating illness.

I hope some of this helps you. Please remember you are not on your own. Reach out if you need help 🩷

[Endo_warrior01 in reply to Tiff22]

Oh it’s so awful to be made to feel that way isn’t it. I am a nurse myself and the last thing I would want is to waste NHS time, money, resources etc. I feel like I have had to push so hard in advocating for myself but it’s absolutely exhausting. I’ve been told to present to A&E if I’m struggling but I know I will just get pushed away.

I’m on Dihydrocodeine which is pretty strong and I can’t understand why I’m still in pain!

How did you find your symptoms after your lap? Were they eased at all? I’ve read a lot of women have had surgery but it hasn’t improved things all that much.

Thanks so much for the advice. I have peppermint tea and my mum has ordered me an oodie 🙂 I will definitely look into buying a pillow.

Take care🩷

[Tiff22 in reply to Endo_warrior01]

It’s crazy that we have to push as if we want to waste time and just have a moan. Who would make up having these symptoms like seriously?! Fingers crossed you get your lap date soon and get your answers.

Straight after the lap I was still in pain but put it down to healing. About a month later the pain and symptoms started again, not as bad as before but they are ramping up and the fatigue has hit me like a train. I’m going back to the hospital on Wednesday so hopefully I’ll get some help. That’s another thing to keep in mind. Everyone I know who has endo/ knows someone with it said that they were pain free for one or two years after the lap so I’d gotten into my head that I’d feel so much better afterwards.

Honestly my pillow and oldie were lifesavers! 😊

[Endo_warrior01 in reply to Tiff22]

Thank you 🙂 fingers crossed 🤞🏻

I will bear all of these things in mind. I really appreciate your reply.

I hope things start to improve for you. X

[Busy23]

It's such a shame that everyone has to fight to get to this stage. No pelvic pain is normal and we deserve to be taken seriously. I ended up paying privately to be seen my scan showed a large abcess and from a previous PID that was not treated correctly because no one believed that it was pelvic pain. I then had a laposcopy to treat the abcess and they found lots of adhesions but not endo. Once they get in there they should definitely see what's going on and they should treat what's in there. I agree with nighties and peppermint tea was fantastic. I have joined the pelvicpain.org.uk charity and shared my story if any of you wanted to share your story let's get people to start listening that pelvic pain is not normal.

[Endo_warrior01 in reply to Busy23]

You’re completely right. No pain is normal. I felt as though I was expected to put up with it because I’m a woman and being fobbed off with pain relief with no real plan to find the cause. Thankfully now I am on a waiting list for surgery.

I’m sorry to hear you’ve had such a rough time too. I hope you are doing better now?

I will take a look at the pelvic pain charity site. Thanks for sharing💛

[Cleo45]

Hey, I had symptoms for a while, mostly bowel... Was admitted to hospital several times and got ultrasounds which never showed anything. I had private healthcare through my work so got referred to gynae with ultrasound and no results so sent to a bowel specialist.. they found nothing and sent me back to another gynae who recommended a laparoscopic surgery to see. When they went in they found endo and it is stage 3 but nothing ever showed up on scans. I've had 3 operations now and still in the same pain if not worse. You are not imagining it, all of your symptoms are consistent with endometriosis and the community on here is great to help through any journey. Let us know how you get on <3 xx

[Endo_warrior01 in reply to Cleo45]

I’m so sorry to hear you have had such a hard time and that you continue to be in pain despite surgery. What is the plan for you now if you don’t mind me asking? I hope you are getting the support you need.

Thanks so much for your reply. 💛

[me94]

I also have a small fibriod whixh was found whilst undergoing endo investigations. I'm also a staff nurse and even though now I'm diagnosed with endo work isn't that supportive, it's so tough. Message me whenever you ever want someone to chat to