Still in pain after laparoscopy

Hello! I'm a new poster but have been reading the threads here for a while and have found it really helpful!

I was diagnosed with mild to moderate endo about a month ago after a laparoscopy but (like many here I suspect) have been suffering since I first got my periods. They were so bad I would vomit and sometimes pass out, but became more manageable after I went on the pill for a few years in my 20s. However, they started to get worse again as I entered my thirties (I'm now 32) and this year I started to have constant chronic pelvic, thigh and back pain at all times of the month, particularly after sex, some spotting, heavy watery discharge and UTI type symptoms. I went through a couple of months of infection testing, Ultrasound and smear tests and all came back clear, and it was when I was referred to a gynaecologist that it was recommended I have a laparoscopy, which confirmed his suspicion that it was endometriosis. The gyn took the opportunity to remove what he found in the operation. He explained that while my endo was not too severe, the severity level doesn't necessarily match the amount and persistence of the pain and the pain could reoccur.

It has been 5 weeks since the op and I generally felt quite a bit better until I had sex with my partner last weekend. Since then the chronic pelvic pain has reoccurred,the same as before. I have been prescribed progesterone and tranexamic acid but I was going to see how things progressed for a bit before going on the medication but have quickly changed my mind! I am a bit surprised (and obviously disappointed) that it has reoccured so soon, only after one period. Is this normal?

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  • This sounds like quite a typical scenario in general gynaecology. A thorough diagnostic lap is a time consuming and detailed process but so often in general gynaecology the surgeon just looks at the reproductive organs for signs of peritoneal endo as they are obstetricians and primarily concerned with fertility. However, endo can be in many other places, particularly behind the uterus in a place the pouch of douglas - the most common place for endo but sadly the most often missed. This can have deep endo of a different form hiding beneath adhesions that can look like normal peritoneum (pelvic lining) so a general gynae might even look there but report it as normal when it isn't. Your symptoms suggest this might be likely. Have a look at my posts to see if you identify with rectovaginal/uterosacral ligament endo and also the one on the diagnostic lap. The first thing you need to do is obtain a copy of the report sent to your GP so we can establish whether they even looked at that area as required.

  • Thanks so much, Lindle - that is extremely helpful! Yes, without having seen the report, all the documents I do have and the discussion with my gyn (who has been good but primarily is an obstetrician), I think the lap was primarily focused on the peritoneal area and I've been diagnosed specifically with peritoneal endometriosis. I will take a look at your past posts - very interested in looking into the pouch of douglas as that sounds very feasible to be honest. I have also had a history of sciatic pain and stiffness impacting my lower back and legs, which I have always thought of as separate to my gynaecological issues but now feel and seem more intertwined than I had thought - so there is plenty for me to look into!

    Thanks again for your thoughtful reply x

  • Peritoneal endo can be found in the pouch of douglas as the peritoneum lines the pouch but it is what might lurk beneath that can be missed. Have a look at my post on the peritoneum too to get a feel for the anatomy.

  • Thanks, I will - I wish I paid more attention in biology when I was younger haha! Very helpful x

  • Hello hunni,

    I am so sorry to hear you'rehaving such a rough time.

    I just thought I would share my experience as I am going through the exact same.

    I had a laparoscopy to remove my moderate/ severe endo in a bsge centre on the 6th of May.

    I had a little bleeding for the first 3 days but after that I felt fine, 3 weeks after surgery, I had intercourse with my boyfriend of 6 years, it hurt during but I was comfortable. After intercourse, I decided to check my mirena coil strings, I had the mirena fitted during my surgery. My strings felt longer than usual, then I started to get this crippling pelvic pain, then an hour later I started to bleed heavily. I took codeine & paracetamol, along with ibuprofen & a hot water bottle to try to ease the pain but ended up getting no sleep due to pain.

    So the next day I was still in pain and bleeding so I decided to go to see my gp, he thought that I may have a womb infection and prescribed me antibiotics and said if the pain gets any worse of the bleeding gets worse then go straight to the hospital, so I dosed up on more pain killers and managed to get through that night.

    Saturday morning last week awoke to myself flooding, so I went to the bathroom and the toilet was covered in blood, sorry for the tmi! I was bleeding so much heavier and the pain came back stronger than before.

    I was curled up in a ball and couldn't do anything because of the pain so my family decided to ring nhs 111.

    They decided to send out an ambulance.

    When the paramedics arrivthey helped me to the ambulance, holding me as I felt ready to pass out, did all of my obs and gave me some gas and air, this didn't touch the pain so they inserted a cannula and gave me some paracetamol through my cannula and 2 shots of morphine. This helped the pain relaxed me so they took me to the hospital.

    When I arrived they took bloods, urine etc.

    Then gynae came to see me, she did an internal to see if she could see anything. This was extremely uncomfortable!

    When she had finished, she covered me up, she said... "your coil looks okay, I can see the strings, there is no signs of infection from the urine and temperature, you are very clotty inside, it seems to me your endometriosis is active again due to you bleeding and this is why you are in pain, the more you bleed, the more it will build up again."

    I burst into tears, I couldn't believe it, she was very sympathetic too which was nice. I asked my mum to ask the doctor to repeat what she had as it wouldn't sink in. Then she said there is no cure and it will always come back. She prescribed me more codeine and oral morphine to help me to cope.

    A week on and I have stopped bleeding thankfully, the meds are just about managing my pain.

    The pain seems to be worse and more frequent than before I had my surgery.

    I am gutted but, what can we do?

    I hope this is of some help to you sweetheart,

    Sending my love xxx

  • I'm so sorry to hear that, shazlovesvo....Big hugs to you. Thanks for responding to me, I hope we can both find some way to relieve this pain for good xx

  • Thank you hunni, big hugs to you too! & yes let's hope so!

    I posted a little poem on here last night if you want to have a little read of it xxx

    Drop me a message if you ever want to talk xx

  • I took a look at your poem - it is really brilliant and does get across what it is like. Thanks so much for your kind words xxx

  • Thank you hunni ♡

    Well I spoke too soon, I've just started to bleed again :( xx

  • Hi shaz and daisy, sorry you are still suffering after what you hoped would help you feel so much better,

    You both need to be referred to a bsge specialist centre, general gynes can often miss endo in certain locations, and the gold Standard of treatment is a thorough excision job done in a bsge centre, I'm in a similar situation, I was diagnosed back in march last year. Had excision and a hysterectomy in July for adenomyosis, I'm still experiencing pain, even without periods, I'm now under a bsge centre and am awaiting a laparoscopy again to see if anything g was missed, I'm positive it has been missed, xx

  • Thanks Tboag, that's really helpful to know. I hope all goes well with the second op - such a long process for you. Hope you are doing well xx

  • Hi,

    Im going to wade in here with a different line of thinking.

    I think its the mirena without a doubt.

    So many women report non stop bleeding,heavy clots,cramping from it.

    Pop it out and i bet this will stop.

    Its all up to you,but its a process of elimination.

    The doctor suggesting because you are clotty means the endo is back is totally inappropriate and has just scared you more.

    There are some other mirena posts on here and youll see what i mean.

    Kind regards

    Rose xx

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