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
Month 4 of cerazette-having a lighter period but the pain is still pretty bad.
Bloating two months post laparoscopy
Endometriosis- anyone had the same symptoms come back a few months after laparoscopy?
Which country of the UK are you in as treatment options vary?
I am in England
Do you have any suggestions?
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?
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!!
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
Thank you I really appreciate your help!