Lap with general gynae found no endo, should I pay for a second opinion with endo specialist?

[Hedgehog_1]

Hi, sorry for long post, going into detail in the hope someone recognises symptoms. I have had pelvic pain most days for around five years. Mar 2019 I had a laparoscopy to look for endo. None was found but they did find adhesions around my bowel and appendix. I was referred to the surgical team but they just did a ct scan and discharged me after seeing nothing untoward. i was also referred to musculoskeletal and they gave me exercises which didn’t help. My regular pain is in almost like a knicker line up towards each ovary. Any repeated bending action makes the pain worse. It’s deep inside and is like a burning throbbing pain. It feels like my insides are pulling on each other. I also get pain in my hips that feels like nerve pain and causes me to limp sometimes. Area around the ovaries also aches , throbs and has shooting pain keeping me awake. Some low back pain either side deep inside. Also bad pain if I’ve been in same position for a while once I straighten up. Periods are v painful. A few months ago we were away for weekend and day 3 of period I was in such pain I had to go to a and e. Like a single contraction lasting for around 5 hours til I had oramorph. Pain down legs, was sick and had diarrhoea and was pushing into my bum like labour. They saw a cyst but that’s since disappeared. when I had a follow up scan the person doing is suggested endo to me due to the sticking of both ovaries. Back under general gynae now and he just wants to give me prostap for 3 months and if that gets rid of pain just do a hysterectomy. I feel this is not getting to the root of the problem and don’t want to mess with my hormones. He doesn’t think it’s endo because of the previous lap not showing it. I booked a private appointment today to see a n endo specialist on Fri. Wondering if you think this is worthwhile or am I wasting money after the previous lap found nothing. I’m reluctant to take the other route. Sorry for the essay, any insight much appreciated, thanks !

[Dartmouth93]

Hey lovely, just wanted to reach out because I can relate so much to your post! I had a lap by a general gynae in August this year after years of symptoms and a family history to be told nothing was found and I’ve been discharged. I had previously been diagnosed with polycystic ovaries as well which showed on an ultra sound but was told my ovaries looked normal during the lap. I couldn’t believe reading your symptoms because you explain the pain so well exactly as I would - I was cleaning the house Saturday and the repeated bending meant I was in a lot of pain that evening. I’m currently looking at booking a specialist privately and paying for a second opinion, a lot of women said on my post that their endo was missed first time round if you want to have a look at my post. So just wanted to say you’re not going mad and I fully agree with a second opinion, you know your own body xx

[Hedgehog_1 in reply to Dartmouth93]

Thanks so much for your reply, sorry to hear you have also struggled to get answers. I will have a look at your posts, thanks. I think I just have to go with my gut instinct. Like you say, you know your own body and when I started reading about endometriosis recently it was like a lightbulb moment. I felt almost like I insulted my general gynae today by saying I wanted a second opinion but I need to know if there are other options before going down the hormones and hysterectomy route. Even though I’m 49, I would rather let nature take its course if I do turn out to have endo and if excision is an option. Thanks again, take care x

[Moon_maiden]

I’d agree about a second opinion. I’d also suggest getting the medical info about op from the hospital. You can normally apply on the website, but they say it can take 28 days.I’d always though adhesions could be endo, I’m sure I’ve come across this.

I was so pleased last year seeing a gynae privately. I’ve also seen NHS consultant privately who is doing op, I had a call on NHS, but I wanted to see him face to face. The op is NHS though.

[Hedgehog_1 in reply to Moon_maiden]

Thanks for your reply, I did wonder about this and if the private consultant will be able to access my medical records. She is seeing me privately but is also NHS . As I’m seeing her this Friday it’s probably not enough time to have the info sent over. I came out of my nhs appt and sat in My car and just booked the appt with the specialist straight away! Hoping that after the initial private appt she will put me on her nhs list if she thinks she can help. I also read that adhesions can be cause by endo but my gynae seems to think it’s related to appendix since a lot of the adhesions were there and on the bowel. But I’ve never had appendicitis area pain and the attached ovaries have occurred in the last year or so. So I’m not convinced!Good luck with your op, what procedure are you having? X

[Moon_maiden in reply to Hedgehog_1]

When I saw Gynae he could see test results and how often I’d had uti tests 😂. You’ll get, or should, a much better appointment when you see her.

The other one maybe correct with endo in the appendix area, you don’t always get pain with this from what I gather.

Hope it goes well, let us know how it goes.

[Lindle]

You have many symptoms of deep rectovaginal endo - are you seeing a surgeon who works in a specialist centre?

[Hedgehog_1 in reply to Lindle]

Hi there, do I? Maybe that means it would be harder to diagnose by a non specialist? Yes she is the lead in specialist endometriosis centre so I’m really hoping she can give me some good advice on next steps and whether the advice I had today is sensible or whether more exploration is worthwhile. Thanks for your reply, means a lot , feel like no one really knows what I’m going though and took me a while to post on here x

[CourtneyD]

Hi! You literally describe what is in my brain everyday so much better than I ever could! I have had pain for 4 years to be told it’s just ibs and that I have polycystic ovaries but it shouldn’t cause pain. I’ve been fighting to be heard all this time. I had a laparoscopy 2 years ago where nothing was found apart from polycystic ovaries and ibs and was discharged. Pain has been getting so much worse over time. Saw a consultant last week and it finally makes sense he says I have endo but it can take a while to develop enough to be seen in laparoscopy! I’ve never heard this before so it’s so reassuring all I can say is don’t give up and keep trying everyone! I honestly couldn’t tell you how many different people I’ve seen I’ve seen 3 just privately now! But you will find someone, your symptoms are the exact same as mine I’m still learning along the way! Feel free to message me anytime I know it’s so frustrating as I’ve only just found someone that listens now but you will find someone! Take care xx

[Hedgehog_1 in reply to CourtneyD]

Hi there, thanks for your reply. Sorry to hear you have been suffering and struggling to be heard too. Sounds like you have finally found someone who is listening and trying to get a diagnosis for you which is encouraging. I put up with the pain for a few years before becoming determined to get to the bottom of it . We shouldn’t have to put up with pain day in, day out to the point it just becomes normal. Whilst we don’t necessarily want to be diagnosed with a condition we do want an explanation for the pain and how to beat treat it! Good luck, keep me posted how you get on and I’ll let you know how Friday goes 😬🤞x

[CourtneyD in reply to Hedgehog_1]

Yeah that’s exactly it! Thank you! Good luck for Friday hope you get some answers!!xx

[Lofty1589]

I’d definitely get a second opinion and it needs to be with someone who has at least a special interest in the condition. If you have Endo, a hysterectomy will not solve your pain. If you have Adeno which is confined to the uterus, a hysterectomy would help but with Endo in the pelvis, it’s going to grow back. Prostap is something that you need HRT with really because that will help protect your bones and reduce the amount of symptoms you have (or should as sadly this didn’t work in my case)Good luck 💛

[Hedgehog_1 in reply to Lofty1589]

Hey thanks for your reply! Exactly my thoughts, is a very blunt way of dealing with it I think, to do the hormone treatment and then just do a hysterectomy. I feel I really need to find out the cause and rule out endo before taking that route and if it’s caused by the adeno and that the best solution so be it. I dread messing with hormones and the fact that the hrt didn’t help you is even more off putting. We don’t want to any additional problems along with the pain do we! Good luck x

[Lou93]

Hi I have been in your situation went through nhs for years to try and find out what was going off after so many scans tablets hormone treatments etc had a lap done by general gyne and they didn’t find anything, was told to basically put up with my heavy irregular periods but I knew something wasn’t right so I got a second opinion best thing I did ☺️ my consultant who I see now is a specialist in endo.

First appointment I had with him was a private appointment and he did suspect they had missed it as general surgeons in gyne can miss it, I had a lap done with him and guess what I have endo and adeno so please get a second opinion and don’t give up☺️

We know our bodies and if something isn’t right 🤞🤞 for you keep us posted xx

[Hedgehog_1 in reply to Lou93]

Ah thanks, this is encouraging, sorry you had to go through all that but glad you got there in the end. I feel that even if this specialist doesn’t think I need more tests, at least I’ll have tried before taking a more drastic option. I’ll always wonder if I should have got a second opinion if not.let me know how you get on and best of luck x

[Lou93 in reply to Hedgehog_1]

Have you got an appointment with another Dr Friday then about it all?

Seems they want to put everyone on injections at the moment, I’m on zodalex waiting for hysterectomy but i have endo and adeno 🤞x

[Hedgehog_1]

Hi ladies, just to update you i had my consultation with the endo specialist today and it’s the best money I ever spent. She said I have all the classic symptoms of endometriosis and she’s certain it was not picked up on with the previous laproscopy, either because it wasn’t a specialist performing it and can be hard to spot or it was early stages and again harder to pick up on. She was respectful of her colleagues but said it’s absolute key to have a specialist as it can be so difficult to spot. She made me feel I’m in good hands and has referred me to her nhs clinic. Only downside is the wait for laproscopy now on nhs but at least I know that when she does it herself she will make the right judgement call for treatment. The general gynae on Monday was all for hormone treatment and hysterectomy, but that would not address the pain if it’s in other areas which it seems to be. Feeling very relieved and a bit emotional. Thanks for your advice , I’ll keep you pasted and let me know how you are all getting on ❤️