I’m just feeling really lost right now after my laparoscopy

[Greensea]

I had my laparoscopy done on the 25th of April this year. I had all the symptoms of endometriosis (extreme pain, heavy periods, irregular periods, cramping, bloating, pain during and after sex etc), and had to basically force the gynaecologist on the phone to get me an appt for a laparoscopy. When I finally had it done I was so exited, but they told me they didn’t find anything. They said that they had fitted the coil like I asked and to take paracetamol/ibuprofen for any pain, and just sent me home. I didn’t ask any more questions as I was still very drowsy and confused, they didn’t show me any pictures, didn’t tell me where they looked, and didn’t give me any post op advice. The letter came through saying it was something to do with my bowels but I just don’t believe it. Since the operation I’ve been bleeding heavily every day. It’s been 50 days now (I’ve had maybe 5-8 days where I haven’t bled but they weren’t in a row it was random). I’m just so tired and exhausted but I managed to get my doctor to give me a way to get a second appointment. But I’m still in college and they want answers as to why I’ve not been in since the op. I’m just mentally, emotionally and physically exhausted, I’m regularly in pain and I’ve decided to stop the bleeding by putting myself on the combined pill so I don’t become anaemic again. (I got anaemia from when I first started getting periods, they were very very heavy and lasted nearly 6 months before I got put on the pill). I just feel like I’ve been fobbed off and that I’m under a lot of pressure from college to continue to perform at a higher standard (I’m 18). Does any one have any advice??

[CryBaby91]

Hi Greensea, firstly I'm so sorry you've been left like this! Can I ask, was the gynecologist you saw a proper BSGE registered endometriosis specialist? I'm guessing not? Endometriosis can effect the bowels, but you need a proper specialist to handle anything of that severity because a basic gyne just hasn't got the knowledge or experience to deal with it, even one with a "special interest" in endo would not be able to help fully. Endo that is impacting on the bowels and or bladder or any other organs is classed as severe so you would need to see a proper specialist, is there a way you can ask your GP to refer you to your nearest NHS endometriosis centre? You can search for this online so you have the name of the hospital and consultant you want to see. If they won't do that then there's the option of paying for a private appointment which will get you in the door of the consultant you want, most then have NHS lists they will transfer you to so you should only pay for that first appointment.

Some other advice would be to make a complaint with PALS, they can speak to your gyne with your concerns that you've not been fully informed of your surgery. Also speak to your GP, they may have access to the surgery notes and might be able to give you more info.

With college, they absolutely should not be putting you under all that pressure! There's protections in place for disabled students, or students with health issues, and the college has to support you and make reasonable adjustments to allow you to have the same chances as any other student. I'm with the Open University and they've been so supportive, so if you feel pressured and like you're not being heard then please speak to someone about your health and request some adjustments like more home learning and extensions for work. You have every right to ask and they have to make things fair for you, you have health issues which are effecting your performance, you're not being lazy!

Sending you a massive cuddle, I'm so sorry you're having to do all this at 18 and also try get through education. Stand your ground and don't be afraid to make complaints, I wish I had been more forceful when I was 18 and in pain, maybe I wouldn't be 29 and still waiting for answers! Xxx

[Greensea in reply to CryBaby91]

Thank you this really means a lot. The doctor sent me a letter of places to call for a second opinion. But the hospital I went to for my lap has never been any good (they’ve nearly killed so many of my family members because of neglect etc), they didn’t give me any information and I really don’t think the doctor who performed the surgery was a specialist. And I didn’t actually get to see a gynaecologist, when I asked to speak to one I got two phone call appointments, the first time they told me back pain was not a part of endometriosis and that it was probably IBS and sent me for an ultrasound (I’ve had so many and even the ultrasound technician said it was pointless), the second time I told them I wanted a lap so they got me in touch with someone else. It’s just been me being passed from “professional” to “professional” who each time tell me it’s to do with my bowels without investigating my complaints fully. They only seem to focus on the bloating and never any of the other symptoms :/

[CryBaby91 in reply to Greensea]

Jesus that sounds like my hospital lol they almost killed me when I gave birth to my son, I started hemorrhaging and they left me bleeding for an hour before realising I needed surgery to remove my placenta! I told my GP not to refer me there because I didn't trust them to actually do anything. The gyne there told me the same thing love, that back pain isn't endo related and I go online too much 🤬 the specialist I saw was horrified that I was spoken to that way, he said all my symptoms match endo and I definitely shouldn't be getting told its just IBS. So please don't give up babe, push for that specialist! I paid privately to see mine after 10 years of being let down, was worth every penny. Xxx

[Greensea in reply to CryBaby91]

I’m tempted to save up and do the same, just because I’ve heard so many stories (especially from my aunt who’s diagnosed) of women who wait for a diagnosis for decades

[CryBaby91 in reply to Greensea]

It seems to be common yes but I think that's also down to how misunderstood endometriosis is, how little tests there are for it etc. With the surgery being the only real way to 100% say you have endo that really slows down diagnosis. And the misconception that if you've had kids you don't have endo, which was said to me yet 60-70% of people with endo have no or little fertility issues! I hope you manage to get sorted love, just know you're not alone and lots of us understand how frustrating all this is xxx

[Starry in reply to Greensea]

Fwiw I had a rarish form of endo that's hard to diagnose in part due to location. A deep infiltrating recto vaginal endo nodule. I suffered from puberty and remained undiagnosed for over 20 years. I had back pain the whole time. After I got properly diagnosed via my bsge endo specialist and had my excision my back pain vanished overnight! I'd been fobbed off so many times after MRI failed to show anything to account for it. But it definitely was endo. I also got severe constipation caused by the endo as it was cyclical, so not IBS. Good luck and stick to your guns. Xx

[Greensea in reply to Starry]

This gives me so much hope. I had a lap and they said they found nothing and it was probably just bowel issues. I felt like they thought I was just being a hypochondriac or something

[Starry in reply to Greensea]

Endo can grow anywhere. Mine was in various places: on 1 ovary, on uterosacral ligament that's very common for back pain apparently and on bladder (a small amount but symptom havoc) and most of all on bowel wall (which grew into vagina and did a lot of damage, non painful sex is something I've never known) and in pouch of Douglas which is really hard to inspect thoroughly as it's a tiny tiny cavity . I read somewhere that young endo cells are transparent so especially hard to spot, later they go red, black white and are larger so later also then a competent non endo specialist surgeon would find it. Eventually in advanced cases like mine became you get adhesions and nodules (benign tumors) . Don't be fobbed off, follow up with your bsge endo centre/specialist and go private if need be and get one with a good reputation. I think its great endo awareness is so much higher among young people than it was 20 years ago. Good luck xx

[Greensea in reply to Starry]

Thank you. The only reason It even occurred to me is because I share every single symptom my aunt has has and she was diagnose a long time ago

[Starry in reply to Greensea]

They do say it runs in families. I strongly suspect my Gran had it. Good luck and hang in there xx

[Greensea in reply to Starry]

Yeah my aunt isn’t the only one in my family who has it either, my older sibling has pcos too :/

[Dogmad6]

You've been so badly let down and it sounds very much like you do have a serious case of endometriosis affecting your bowel. IBS seems to be the thing everyone gets fobbed off with. What gets me is that I've been reading the same sort of stories of this happening for the past twenty years and nothing has improved. It's appalling. You get sent to someone who knows nothing about the condition who then fails to find it despite being willing to put you through the risk of surgery (EVERY operation carries some risk)I agree with the other replies. You need to see a proper specialist and if you can possibly get the money, go privately. Find the nearest best person to see and ask for a referral.

I'm sorry your college isn't helpful, surely your GP could give you a sick note to back you up. Basically you are now worse because you are recovering from an operation that did you no good and likely stirred up your endometriosis.

Good luck 🤞

[Greensea in reply to Dogmad6]

That’s exactly what it feels like yeah. I thought the OP would make things better but it’s just been so much worse since then

[Dogmad6 in reply to Greensea]

I'm very sorry for you because I've been through all this myself . Hope you get the help you need xx