3 months post laparoscopy. Is it normal t... - Endometriosis UK

Endometriosis UK

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3 months post laparoscopy. Is it normal to still be having these symptoms...?

Sealo profile image
12 Replies

I've just come across this forum and I am really hopeful you all can help me better understand what is happening as Im beginning to feel rather hopeless about it all...

Im 19 years old and I had a laparoscopy 3-4 months ago to diagnose and then to treat moderate to severe endo following years of worsening lower back pain. My surgeon told me after the op that they had managed to treat it all. I also had the mirena coil inserted during surgery. I was so positive and hopeful that this would be the end of the pain and that I'd finally be able to go about my life normally; however, since then the pain has been constant and exhausting, and I am getting to the point of wishing I had never had the surgery in the first place as the pain is so bad - Ive been experiencing intense bouts of lower back pain that goes down my legs and into my feet - it is a lot worse at night and wakes me up many times throughout the night, continuing usually until mid-morning. I have also been bleeding (very heavily at the start but getting lighter) for 3 months straight. I went to A&E twice in the first month after the op due to the pain - I was prescribed codeine the first time which didn't make much difference, and then 10mg amitriptyline (nerve/back pain medication) the second time, which helped slightly for a few days before the pain came back. Following an appt with the surgeon she advised me to take the pill back to back (rigevidon) to stop the bleeding and help with the pain. I am now 2.5 months into taking it yet it's done neither... She also doubled the dose to 20mg Amitriptyline yet it still only helps a small amount.

I would be so so grateful if anyone could offer some advice/insight as to what I should do...

Thank you so much and Im so happy to have found this community

12 Replies
Lindle profile image
Lindle

Which country of the UK are you in as treatment options vary?

Sealo profile image
Sealo in reply to Lindle

I am in England :) Do you have any suggestions?

Lindle profile image
Lindle in reply to Sealo

Moderate to severe endo (stage 3/4) must only be treated in a tertiary specialist endo centre. The pain you describe of lower back pain referred down the legs is typical of rectovaginal endo (deep endo behind the cervix) and is usually present with severe endo. Did you have your surgery in such a centre or was it just in gynaecology?

Sealo profile image
Sealo in reply to Lindle

I had it done by a gynaecologist in a private hospital but not one specifically for endo... Is it abnormal that these symptoms have got worse post op because I had never experienced leg pain prior to surgery? Thank you for your help!!

Lindle profile image
Lindle in reply to Sealo

If a gynaecologist with no advanced expertise in endo operated privately on severe endo then it was against UK regulations. In fact if this were to be done on the NHS it would be against the law.

Leg pain is usually caused by endo on the uterosacral ligaments but it can also be caused by damage to the ligaments that can happen when surgeons without expertise operate on that area.

Will pm you as to where to go from here. x

Sealo profile image
Sealo in reply to Lindle

Thank you I really appreciate your help!

Chloelouise92 profile image
Chloelouise92

Hey lovely, you sound like you’re having a really rough time especially as you’re only 19! Where was your Endo located? I’m in a different situation to you as I was diagnosed back in August this year but they didn’t remove it then and I had to have another lap later. I’m only just over 2 weeks post op but I’m still feeling all my usual symptoms, if not worse than before. I had deep Endo removed from my uterosacral ligaments and pouch of Douglas but I experience the leg pains you are describing.

I would say you need to speak to your gp as the symptoms shouldn’t be worse. Just throwing medication at you isn’t solving your issues and I know there isn’t a simple cure for Endo but just covering it with pain relief isn’t really treating you, especially at your age.This forum has been an absolute godsend to me over the last couple of years. Speaking to women who experience this condition is more helpful than anything, as we know our own bodies and I think having somebody to relate to for advice or even just to vent when you’re having a bad day is so important. I still feel like I’m learning about Endo every single day as there’s so much to know!

I really do hope you get some relief from your pain soon x

Sealo profile image
Sealo in reply to Chloelouise92

Thats very reassuring because my endo was in the pouch of Douglas too so the leg pain could be associated? I also had it around my pelvis -I agree this forum is amazing its made me feel a lot less alone in this as I feel its a disease that's still very misunderstood / unrecognised. I hope its only up from here for you and me both and that you have a lovely xmas!

Ellenlar profile image
Ellenlar

Hi hun it could be the merina causing pain. When I had merina it was eveyyday worse pain for ages 😓😓 I went a and e for it, I hope your okay I don't know what to suggest but I feke similar, remember the merina is a life saver for some and not the best for others, but I know people have said they are worse after surgery. I had mine last week (I'm 22) my 'ibs' which wasn't ibs haha is alot better but my bladder issues and pressure are Worse... Again I really don't know I just understand what your going through, sending my best

Teddy2021 profile image
Teddy2021

Sorry to hear that the lap hasn’t alleviated your pain, I don’t have an answer for you but wanted to let you know I’ve experienced the same. I had my lap 2 weeks ago and the last two days I’ve had pain in my lower back and down into my leg, it’s keeping me up at night and unaffected by codeine. Sorry I can’t offer any solutions/advice but thought it might help to know you’re not alone in how you feel.

Sealo profile image
Sealo in reply to Teddy2021

Thank you for the reassurance its not just me! I hope for both of us this is temporary merry xmas!

Gwills profile image
Gwills

Hi there! I had the coil fitted and had to have it taken out the next day as it caused such horrendous pain. It might be worth discussing with your GP as I’ve never heard good things about it when used in someone with endo. Hope you manage to get it sorted ASAP. Also, codeine is the worst to take long term so don’t let them fob you off with that!

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