Laparoscopy was on Thursday - Confused/frustrated

[em_91]

I had my laparoscopy on Thursday. I woke up and asked if they found anything and a GP came and told me they didn't find endometriosis or any reasons for my pain. He then said that my uterus was bulky which might be adenomyosis. He asked me when I was planning to get pregnant and if I had been trying because he wanted to know if I had been struggling, I had not mentioned anything about fertility problems as I am in know position to get pregnant. He told me if I was on the pill it could of "hidden" endometriosis and that I should maybe see a bowel consultant about IBS but that they had looked at my bowel and it was fine. I got upset and he left swiftly. A nurse then came to ask if I was okay and I said I felt more confused than before the op and she said "I assume you are trying to get pregnant" and I said "no I am just in pain all the time". It was so weird, I felt like they only cared about my fertility even though I was there because of significant pain/ symptoms I have on a daily basis. This was directly after I had woken up.

I was pretty sick after the aesthetic for around 4 hours, but asked the nurse to clarify everything again after I was feeling a bit better. She told me they had found endometriosis/adhesions and removed them but that I didn't need a follow up with the surgeon or the doctor and I was essentially fixed.

Later she then gave me my discharge notes which say

"Clinical Details: findings show bulky uterus, normal ovaries, tubes and appendix. No endometriosis or adhesions.

Follow up arrangement

Hospital follow up: None Required

GP follow-up: None Required"

I then said again that I was confused because it didn't mention endometriosis or Adenomyosis and she said that she was really sorry but she had read the notes wrong and they actually said "no endometriosis or adhesions" I said I felt really in the dark and she was sympathetic and suggested I get in touch with my GP to see if she could find out more.

I honestly feel so let down. I don't understand how they can tell me my bulky uterus might be adenomyosis and then not even bother to put it on my notes or offer any advise/treatment or even a follow up appointment. It's like it doesn't matter.

I am really struggling to deal with the fact that SO many women going through the same thing/worse.....it's awful and no one is being held accountable for the failings that are continuing to happen surrounding women's health. I've been fighting all year and am exhausted physically and mentally. I don't know where to go from here.

[kate24601]

I was in exactly the same place as you! Ultrasound scan told me my womb was big and tilted, when I had my lap they just said 'everything is fine' and discharged me, the letter was a sentence long just saying everything was fine and I had to go see someone about my bowels. I've since been treated for IBS and the treatment is helping some of the pain but you know when something just isn't right, don't you.

I was on the pill and feel that might have contributed to nothing showing up, how long have you been on it before the surgery? And I totally get where you're coming from about fertility, I was told multiple times that they wouldn't give me the surgery til before I wanted kids, as they were happy to let me carry on it pain until I wanted kids (which they told me I couldn't possibly want any time soon as I was only 20).

If they suggested adeno then it might be worth asking about an MRI? Doctors are quick to just tell you it's IBS and give you some buscopan and a new diet plan so I'd try the MRI first before hand. Good luck, always here if you need to vent! x

[em_91 in reply to kate24601]

Hi Kate, thanks for replying. Sorry to hear you are going through a similar experience, I'm pretty sure having a big tilted womb isn't normal and deserved treatment or at least an explanation. Good to hear the IBS treatment is helping, IBS is often found alongside of endometriosis isn't it?

I actually only took the pill for a month, the gynaecologist prescribed it at my first appointment but I thought there was a possibility it would hide endometriosis so I stopped taking it. It seems really strange to me that they are prescribing it to people before laparoscopy knowing that it can hide it.

So bad that they won't give you surgery before you want kids, it's frustrating not being able to have a say and being treated like a machine for producing baby's. It's like we're living in the 1920's.

I had an MRI and an ultrasound before my scan, the MRI was looking into my hip pain and didn't even mention my uterus/ovaries etc. The ultrasound was apparently normal except for a retroverted uterus. It makes me even more confused, because I feel like they would of been able to see the bulky uterus on both scans.

Hope you are having a good day x

[Kirst625]

That must be so frustrating and confusing like you say 😥 have you got a good doctor? I'd be really tempted to give your GP a ring on Monday or the gynae dept to try and clarify things and ask them where next. It can be so disheartening can't it and I know it can be easier said than done sometimes, but don't give up if you feel you know your own body well and that things aren't right. Best of luck and keep us posted X

[em_91 in reply to Kirst625]

Thanks for the reply and advise

The doctor that refereed me was really good so I've booked an appointment with her for Friday in the hope that she will be able to clear things up and offer some sort of advise.

I hope you are having better luck, and thanks for the support

x

[Hazel173]

Hey I know exactly how you are feeling, I was diagnosed with stage 1 in various areas last year during a lap then discharged without any follow up. Fast forward to now my symptoms have gotten much worse including not having a period for the last 6 months but constantly being pre-menstral in symptoms. My gp now doesnt believe I have endometriosis and asked me where I got the idea from that I had endometriosis, must of dreamed it all up eh? 🙄 I saw a pelvic pain team who said they are 100% sure I do not have endometriosis. They believe all my symptoms are due to my use of pain relief and anti sickness (codeine and cyclizine) they want me to stop them. To top it all off ive been under alot of stress the last few weeks as ive been working full time and trying to complete 3 modules for uni which has resulted in me having a sore head quite often and my dad called me selfish last night because I am always ill he says, just makes me feel great about myself and supported 🙄 I wish I could be assertive with my doctor but I just crumple when I go for an appointment. Sorry for the wee rant, just wanted you to know your not alone and you can message me any time you want. Take care.

[em_91 in reply to Hazel173]

Hi Hazel,

I'm so sorry to hear you were diagnosed with stage 1, that must of been really hard to deal with especially as they didn't offer you a follow up and that your gp is being so dismissive. You deserve much better treatment and support.

I would go to a different GP. Maybe ask for a copy of the notes/photos from your laparoscopy. That way you can see exactly what has been written down/ any images they took or the endometriosis. It can be really hard to be assertive at the doctors, have you tried writing stuff down like a list of symptoms and how it is effecting your life? You might find it easier than trying to say it all to them as they can rush & skip over things quite a lot.

Have you spoken to your university about everything? They should have some systems in place to help you and they can give you extra time on work to take the pressure of a bit. University can be really stressful anyway without dealing with all this too, sounds really hard at the moment. Your Dad doesn't sound very understanding or empathetic. You are not selfish at all. Have you got anyone else you can talk to about everything other than your Dad?

Hope you are having a good day

x

[Sekhmet]

I have exactly the same problem: laparoscopy on Tuesday with hysteroscopy and Novasure ablation. I have all the symptoms of endo, but the surgeon said they found no trace of it, and the ablation would do nothing for the pain. He told me that my womb was normal though the walls were thickened and 'red', which could indicate adenomyosis, but this was not recorded on my notes. Same discharge summary - "uncomplicated laparoscopy - no endometriosis seen."

I'm going to make an appointment with my doctor to discuss the results. One option is taking GnRH agonists with HRT for six months to see what effect that has on pain. If I could have a hysterectomy tomorrow I would - so tired of pain, hormones etc.

Hope you get some answers. We all deserve better than this... x

[em_91 in reply to Sekhmet]

Hi Sekhmet,

Sorry to hear you are in a similar situation. I can't believe they didn't record the suspected adenomyosis on your notes.

I've just made an appointment to see my GP next Friday to try and find out more information. I think I'm going to ask for a copy of my medical notes from the last year so I can take it to a specialist if I can't get any further on the NHS.

So sorry you are going through all this, you don't deserve to be in pain and not have a diagnosis so you can at least make decisions to help yourself even if the NHS can't/won't do anything. I was reading that they can cut out the adenomyosis if it's not the diffuse kind. Not sure why the health care professionals are ignoring such a debilitating condition.

Heres a couple of links to some useful information,

guysandstthomas.nhs.uk/reso...

adenomyosisadviceassociatio...

x

[Sekhmet in reply to em_91]

Many thanks for the links. Please keep us updated on your progress. x

[emr1989]

I always find its very hard to see a gynaecologist who is actually sympathetic for what you have to go thru. I started my periods aged 11 and started seeing the GP about heavy and painful periods, this became a regular thing and eventually (10 years later) was diagnosed via laparoscopy with severe endometriosis. I'm now 29 and am still in an ongoing battle with gynaecologists to get things sorted. I've been brushed off many times by doctors about how bad my periods were, one GP even told me he thinks it's 'difficult' for periods to be 'normal' and I should expect pain and heavy bleeding...as you can imagine I didn't see him again! It's a very long frustrating road but luckily I have a very supportive family and wouldn't have kept pushing for treatment without them!

[em_91 in reply to emr1989]

Wow, can't believe they are still so dismissive even though you have severe endometriosis. That really is awful, so sorry you have had to go through such a long hard battle.

I can totally relate to the GPs brushing off the symptoms, I went to a urgent care centre a few months ago because I was in so much pain I thought it might be an infection....the GP clearly didn't believe me when I told her I was in pain nearly every day and she told me to "Go home, drink a bottle of wine and have sex".

Really good that you have a supportive family and I Hope you find a team that will give you the medical support/treatment that you need & deserve.

x

[Anyj85]

Hi so sad to hear that so many of us are suffering poor treatment, especially post op. I didn’t get a follow up appointment after my lap either and it left me feeling really disappointed and upset that no one seemed to care. It was only after going for a consultation at a private fertility clinic that when they did the ultrasound I had two chocolate cysts had re-emerged 4 months post op. I did some research and found that if you have stages 3 or 4 endo you can ask your GP to refer you to an accredited endo clinic which hopefully might have better follow up care (according to the policy I read the accredited ones should have). This doesn’t depend on locality- you could go anywhere in England and it would be covered by NHS England funding. I’ve had a really poor experience in Leicester so have now been referred to a hospital in London (St Mary’s) and it’s not going to cost me anything. It’s not for everyone though to travel so far but just wanted to raise awareness of this and get the word out. When I was being treated at the Leicester clinic I ended up going to the patient advisory service. Can’t say it helped much though in my case. Hopefully you will have a more sympathetic secretary for your Gyno because mine was a b@t£h which did not help at all. I wonder if going to your GP and see if they will write a letter to your Gyno asking for a follow up? Good luck

[Orchid_lover]

Hi

I’m so glad you’ve already had some supportive replies on here, it’s a really good forum as it reassures one that you’re not alone and that there are other women out there going through the same as you. Ask your GP or Gynaecologist to refer you for a “transvaginal ultrasound” as that was the way I found out that I have adenomyosis. I got diagnosed in Nov after 7 months of suffering. Prior to it I’d had a CT scan which showed a small cyst on left ovary, but all my pain in the last 16 months to date has been on the right side of my lower pelvis (appearing to emanate from a small lump below my bikini line). I also endured a colonoscopy which ruled out any problems in my bowel (as my GP insinuated I had IBS which I knew I didn’t and 2mths of buscopan & Colofac confirmed that!). In Jan I had a Laparoscopy and like you I was very disappointed to be told there was no Endometriosis (should have been relieved but I woke up still in so much pain!) and they only found a small fibroid. After, my Gynaecologist pretty much dismissed me as she said the focal (which means a localised amount) adenomyosis was too small to possibly cause my constant stabbing pain, so she referred me to a Urologist. He did a Cystoscopy in June for seeing if I had interstitial cystitis, but bladder looked normal. He then decided to do a Urodynamics test, as he said I have a reduced bladder capacity & he wanted to rule out an overactive bladder. He did the test incorrectly (long story!), but basically he decided I have “Painful bladder syndrome” (he even admitted medics label patients with a syndrome when they can’t explain what’s wrong with you!!) & apparently I am the type of patient with all the symptoms, but not the physical signs & he said my pain was neurological (polite word for all in my head)! He’s told me to try gabapentin and ask for a referral to a chronic pain management clinic (where they suggest Pilates & diet - hmmm big help!). Anyway, I’m asking GP today for a second opinion as I felt thoroughly demoralised, so I feel your pain 😔