What to expect?

What should I expect from gynea appt in endometriosis clinic?

Since May or June now, I have a compex cyst on my right ovary 4 cm big (maybe bigger now?). It caused significant pain and other symptoms, preventing me from walking etc. Codeine etc didn't help. I saw a gynea in an urgent appt 2 months ago who put me on the pill (I already have the coil) and suggested that sure, I have a cyst, but my numerous symptoms are likely caused by endo. This eased things up a touch and I got put on a waiting list (apparently...) for a lap, and I FINALLY have an appt with him next week - I'm so excited! I'm in chronic severe pain daily. I can't take codeine as it makes me vomit and naproxen gave me side effects. I didn't want tramadol. No idea when surgery may be, or if I'm actually on the mystery wait list he said I would be put on.

Thanks.

19 Replies

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  • From my point of view, you should not do surgery. It is very dangerous for a woman to do surgery, because the treatment is very likely to lead to some unwanted complications. Taking medicine, I think, is a good idea. And the medicine you mentioned above, is it a painkiller or some kind of medicine to relieve the inflammation? I do not think they will be the solution in the long term. I know that cause I used some painkillers to stop my pain, but they did not seem to be much helpful as the time went by. At last I was finally cured by a kind of medicine, it is called fuyan pill. I can see the changes in myself. At first, the pain would relieved and I felt much better. The next month following, I could see that my pain could not even appear. At last, i could not even feel the pain. And now I am hopeful for the future again.

  • Thanks for replying. At the current stage, I see surgery as the only option. Painkillers do nothing as I said. I know people who have had laparoscopies without complications. My risk is raised as I have type 1 diabetes, but that is for me and my doctor to discuss. My question is - what should I expect from the initial appointment in an endo clinic? Will I have a ultrasound that day? Will I be asked questions about my periods etc?

  • Hi,

    I'm not sure this will be any help as my experience sounds a bit different to yours, but can tell you about mine. When I went for appt at kings, the doctor just asked about symptoms, all the usual stuff you have probably already told GP etc, do you have pain, where, when, other period Qs. I then had a ultrasound (the internal kind!) which was okay but he said my ovary looked really close to my uterus so they called the other Consultant in to have a look. They advised a lap which I had within 6 weeks and told me I have endo. I'm waiting for another surgery now because it was quite severe so I need to have MRI etc. I don't know if hat helps at all? The lap wasn't too bad, I was really nervous but they will only do it if they honk you need it and they know what they're doing.

    R

  • That's really helpful! Thanks for replying! I mainly wanted to know if they tend to do the ultrasounds there and then, or if you have to return for that - symptoms depending. I want to know whether the cyst has grown or what. I'm having more symptoms (bladder/bowel and bloating) than before despite all the hormones I'm taking. It's gone on so long!

    I'm excited for a resolution, but it doesn't sound like you ever get one with endo... :/

    Hey - you had/having an MRI - how come? The gyn I saw in the urgent appt said he doesn't refer patients for them. He said that MRIs are expensive and if it's looking that severe, you are more than likely going to need surgery anyway so you may as well just do the surgery and veto the MRI. What are they looking for on the MRI?

  • My experience was similar to Eating for Health. I think it will depend on the hospital you attend as well as your Consultant. It really is a bit of a postcode lottery too as I have discovered. You will be asked lots of questions about the pain and what makes it worse (exercise, sex, impact sports etc). They may give you an internal examination.

    I would suggest you write a list of questions to take with you as you may forget things once there and also take notes when there as you may be given a lot of information. Good luck x

  • Good idea. I bring questions with me to my diabetes appts, but in all honesty, I may as well not go to them. The registrar's are useless and uncompassionate. I hope this isn't a similar experience!

  • What cured you? Medicines name?

  • Surgey is the only way to properly diagnosis and grade endo, and it is also the only way to remove it; hormone treatments will suppress it, but not actually get rid of it, and pain meds will only mask the symptoms. So a lap is a good idea given the amount of pain you're in. Generally speaking it's pretty low-risk as far as surgeries go :-) It can also be very successful: I had my second one summer 2010 and have been pretty much pain-free until the last couple of weeks (although I have also been on continuous hormonal BC (mini-pill) the whole time which has also helped).

    To keep pain under control pre-op my suggestions would be to try some less strong painkillers (I found ibuprofen and paracetamol taken at regular intervals (eg 2 ibuprofen at 8am, 2 paracetamol at 10am, 2 more ibuprofen at 12pm,2 more paracetamol at 2pm, etc) helped a bit); the trick is to start taking them early in the day (with breakfast for eg) before the pain properly kicks in, and to take them very regularly. I also found heat patches really helped, and I know a few people who swear by TENS machines. Also try not to over-exert yourself or do things that might trigger the pain.

    HTH and good luck with the lap!

    PS MRIs can identify more remote endo, and isn't a standard diagnostic procedure; it's used in more extreme/severe cases.

  • Ah! So an MRI could detect endo in less common places? I read you can get it in your lungs and stuff? Nasty stuff.

    I feel like I'm in an incredible amount of pain, but I'm a wussy and I'm sure others are in more. I gave up on ibuprofen and paracetamol when I realised it did nothing, but perhaps I should start again. I hate how much stuff I'm taking - since I'm diabetic too, I'm constantly doing something medicine related.

    Thanks for the support :) the gyn and GP both think it's endo, so I'll push them for the op. I'll google TENS too. Thanks :-)

    Good luck with your pain x

  • Basically, yeah. Most women just have it on their reproductive organs, or in the pelvic cavity, but it can be literally all over (inc the lungs, like you said; really nasty stuff indeed!). An MRI can help the surgeon to locate it and then operate accordingly. The average person though will have an ultrasound scan (either abdominal or TVS), though these tens to be of limited use, and then a lap.

    If weaker painkillers don't help at all my personal feeling would be not to bother taking them; maybe just play around with different types/strengths. I can't take the really strong ones (like tramadol) as they make me feel really ill and I just can't function/focus, but I found paramol and diclofenac quite good, with no side effects. Unfortunately with endo it's often a case of trial and error :-( But it's worth it as long-term you should see some benefits

  • Tens unit can be found at Walgreens $30 at most cost. They are battery operated these days it help along with heating pad and rest but endo still takes life away in many ways pain seems forever without results for proven cure permanately I'm sorry I to feel horrible these days and feel u

  • Today's a bad day too. I struggled to get home without collapsing and now I can't focus. I just want to sleep but I'm falling behind on my PhD work. What with this and my diabetes, I'm forever ill.

    I'll Amazon some TENS.

    Thanks ladies :-) x

  • If you are in the UK, ask to be treated in a 'BSGE', Endo clinic. These are scattered around the country, and there is hopefully one fairly near you. Search on here for extra info about these, and for people's advice and experience.

    If the consultant you are seeing is in a BSGE clinic, then okay ... However, if it's just a general gynaecologist in a hospital, then having the laparoscopy just as a means of finding and hopefully identifying the different types of endo, is okay, but I would ask for any removal to be done at a BSGE Clinic, as their gynaecologists are specialists in endo. They know how to search all the pelvic cavity - even hard to access places, where endo is often found, and often missed by non-endo consultants - and they can identify different forms of endo, some of which are often missed by less experienced gynaes. They also have better removal experience and techniques, plus most BSGE clinics have bowel, etc, experts, for difficult removal surgery.

    Removal does not have to happen on a first lap - it can just be a case of putting you out and having look inside to confirm, find, identify etc.

    Surgery can be bad if it is badly, or only partly done, or if pockets of endo tissue are missed, as you are left with scars and adhesions can form, and endo grows back. However, removal is often the only solution when mirena, pills, pain relief, etc, etc don't work. Hence the need to see a BSGE specialist. If you are in the UK, your GP should know this. Also, if the lap is intended for removal without knowing the extent of what's there, or being an endo expert, then I would insist on an exploratory lap, only.

    'Lindle' has posts still on here with loads more detail on Endo, and BSGE Centres. Also check for info on BSGE Centres on the 'Endo UK' website - link at the top of this page.

    [edited to comply with our code of conduct]

    Hope this helps.

  • PS Transvaginal ultrasound can see some types of Endo tissue, but you really need a lap to be sure of the situation in there.

  • Super helpful information! Thanks guys! I just looked up the BSGE. I've never heard of it, even after having looked into going private. I'm being seen in an endometriosis clinic and the BSGE lists this hospital as a centre, so I assume that my consultant would be a surgeon in the BSGE. If that's how it works?

    If you have an exploratory lap, how long have you or others waited for a secondary lap for treatment? I've been (apparently?) on a wait list since September for surgery and still haven't heard anything so I'm assuming that it'd be a long time... I assume you'd need to heal fully first too?

    Thanks so much :-)

    [edited to comply with our code of conduct]

  • Hi, I knew I had two endometrioma cysts when I was referred to see a gynaecologist. During the appointment he asked me lots of questions, then did an internal scan and internal investigation. He told me I needed surgery as it appeared from the internal investigation and all of my symptoms that I had endo (I'd had a lot of bladder pain) as well as the two cysts which needed to be removed. I then had blood tests and pre-op straight away and got a call 3 days after that to give me a surgery date for 2 weeks later. It all happened very quickly. This was through a private clinic in Bath that I was able to choose to go to through the nhs. I hope this is helpful. 🙂 xx

  • Yeah, really helpful. Thank you so much. How did you go private through the NHS? Also, they said my cyst was complex with septations but the gyn said it shouldn't cause the pain.. It grew 1.5 cm in a month. Since it hasn't gone by the second scan, they did some blood tests to look for cancer markers but all negative. Now 3 months after the last scan, still waiting.

    What's the difference between a complex cyst and an endometriosis cyst? I've never heard of it. Is it just filled with blood?

  • I was able to choose this hospital as when I was being referred I had a letter from my GP offering me around 6 different hospital to choose from to see a gynaecologist..its part of the patients right to choose scheme that was brought in fairly recently.

    I got this info from the health line website:

    'Complex cysts aren’t related to your normal menstrual cycle, and they’re less common. The following are three common types of complex ovarian cysts:

    Dermoid cysts are made up of cells you had since before you were born. Your body uses these cells to produce dermal tissue so they may contain fat, skin, hair, or even teeth.

    Cystadenomas contain ovarian tissue with fluid or mucus.

    Endometriomas form when cells from your uterine lining grow outside of your uterus and in or on your ovaries. '

    Xx

  • Ah that's great. I haven't been given such choice. But as I live in Oxford, I think the hospital's are pretty good luckily.

    Thanks for the info - there's so many different ones. I've been avoiding reading up on it - I knew there were different types of complex cysts. I think they're hoping that it will have gone away. The consultant said that they'd do another scan when I see him in standard clinic (as opposed to urgent) and if the cyst is still there, they would operate to remove and check for endo too. If it had gone, they wouldn't operate and they would cancel the planned surgery. But - even if the cyst has gone (what's the likelihood of a endo cyst disappearing anyway?!), If I am still in pain, surely they should still do a lap?.. I just can't wait til the 9th.

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