How easy is it to get a laparoscopy? My GP told me yesterday that I very probably have endo but its unlikely I will get a laparoscopy

[amybird]

I was diagnosed with a biconuate uterus 2 years ago and was told this was the reason for all my symptoms. After trying different things, the mini pill finally settled the pain, fatigue, anxiety etc. I was never told about endo before and I came across it last week and all the symptoms fitted with mine. Discussed it with my GP yesterday and she said that I probably do have it and she will refer me but they probably wont bother doing a laparoscopy bacuase my symptoms are being managed. Does this ring true? Has anyone else had a problem getting this procedure or does this sound like a GP that doesn't want to spend budget/is unsympathetic? I just want a clear diagnosis, even if there is nothing they can do beyond that.

[Natashaoscar1]

It's took me 6 months.. And 2 referrals to gynecology and a load of negative urine samples and blood tests to be able to get one! I think it's a last resort for them these days not happy at all xxx

[Impatient]

Having a bicornuate uterus does not cause endo symptoms, it has it's own issues regarding conceiving and carrying a pregnancy to term, but with endo aside from the fact you are more likely to get endo, the shape itself does not cause endo symptoms if that makes sense. There are at least half a dozen ladies on the forum with a bicoruate uterus (myself included).

And yes you do need to be diagnosed - even if at present your symptoms are under control that doesn't mean existing endo should be ignored.

If you are on the pill and you get a lap op appointment, my advice is to come off the pill and have a period so you are either on when you have the op or finished just before the op so that your endo is active and easy to see - there may not be much endo there to be seen, but anything to help it get spotted and removed is a benefit.

you can return to the pill right after the op to control your periods again.

Furthermore do not discount the mirena coil for long term effective stopping of periods. The manufacturer has a warning that the coil is not designed for abnormal shaped wombs and that is correct, but there are gynae surgeons who can insert the mirena in one side of the womb - you must get this done under general anaesthetic and the surgeon uses ultrasound scans to make sure the mirena is fitted as well as it can be in one side.

There is a greater risk of it being rejected and expelled, but so far touch wood, I don't think any of us ladies with bicornuates and mirena have experienced that.

I know of two surgeons in the UK who do install mirena in a bicornuate. One in the South East and one in the Midlands. there may be more of them about, so do ask when you get your consultation.

If your gynae has no experience of this or scoffs at the idea then let me know and I'll send you the details of the two surgeons (both are endo surgeons) who do have experience of this procedure.

Mirena lasts up to 5 years and stops periods - at a much lower hormone dose than pills, and is something that you might want to consider getting put in during the surgery.it takes about 4-6 months to settle and get to the stage of stopping your periods.

It can have side effects in a very small percentage of women, in which case it can be removed, but so far all the bicornuate ladies I think have done well with it. I certainly have, and don't recall the others reporting a problem.

If they do find endo - then surgery is the only way to remove it too.

first op they would usually use laser or diathermy to burn back the shallow endo, this is effective over most endo and does a good job, but it will not burn deep enough to kill off any endo that is deep. Most endo is shallow and that is the more painful sort too.

Deep endo remaining may require at a later stage having excision surgery to cut it out of wherever it is growing. Excision allows the surgeon to delve deeper.

But if you have hundreds of endo lesions which you might do (no way of knowing till then get inside) then there is no point wasting time excising each and every bit when only a few will actually require the deeper excision.

In lost of cases the laser or diathermy is enough - all the endo is shallow surface dwelling endo.

I would definitely do your homework so you know how to argue with the consultant for a lap op. yes there is a chance that they will consider that you have effective pain management already - but that is a sticking plaster solution, the problem still remains and while there is existing endo there is more likelyhood of it spreading which could impact on your fertility prospects even more than the bicornuate will do.

If you do have a hope of one day becoming a mum and the bicornuate is not severe enough for this to be much of a problem then it adds to your argument for surgery.

Getting a Mirena installed at the same time will also add to your arguments for surgery.

I wish you the very best of luck and hope to goodness you end up with an expert surgeon from the start, but if you don't then let me know and i'll pass on the details of the surgeons I know about who are endo experts and mirena in bicornuate experienced too.

[amybird in reply to Impatient]

Thanks for the detailed reply. When I first got diagnosed with the bicornuate the gynae convinced me to have a mirena coil fitted (i didn't want one as I don't like the idea of a foreign object inside me). I had to go somewhere else to have it fitted and when she did it she was surprised to find I had a bicornuate and informed me it might not go in (no one had told this). She put it in anyway but after 3 weeks of being in constant pain I went back to have it removed. They tried to convince me not to at that point and were saying that I wasn't giving it a chance and essentially not to make such a fuss. When I started crying and told them to just do it, they finally did. When they removed it they informed me that it was sitting inside my cervix which is why it was so painful and I should have had it removed earlier!!

So as you can probably tell, the thought of a mirena coil is a complete no no for me, even if they can do it by surgery.

Essentially over the past 5 years I have had a lot of different doctors telling me to deal with the pain, I just have heavy periods, take pain killers etc. So when I was diagnosed with a bicornuate I was actually relieved as i was told it was quite small so the most I should worry about was the baby breeching if I ever got pregnant.

So now I have been given this new condition, which really could effect my fertility, I feel like I'm back to square one. The mini pill has been a god-send in terms of controlling the symptoms but I can't stay on that if I want children (which I do).

I just feel at the moment that it is one thing after another, I also had a cin 3 6 years ago which I had to have part of my cervix cut out, then the biconuate diagnosis and now potentially endo that I may not get any help for!

All I really care about is managing the extreme tiredness I get (I can deal with the pain) and the fertility issue, but I just don;t hold out much hope of being taken seriously as I haven't so far and it really is getting me down!

Sorry, this started out as a thank you for your reply and has turned into a brain dump! Apologies!!!

[Lilykat197]

It's really NOT up to your Gp to say whether or not you will get a laparoscopy, it's totally up to the gyna consultant. Once you get to see a consultant they will decide the next stage, it is true that if your symptoms are mild and are being managed by hormonal treatment they tend not to want to operate, you see the op in itself can cause further adhesions, however saying that the only way to diagnose endo is by lap and there's no way of knowing what is going on inside until they "go" in.

By the time mine was operated on it was everywhere, so my advice to you would be to insist on a lap to diagnose and remove anything if found.

Good luck xx

[Mabes]

In my area, I'd say it's not that easy.

Like a lot of women on here I've had constant period problems since I started my periods. I had a large ovarian cyst removed when I was 13, and never really gotten any help with heavy bleeding, pain, irregularity except being put on the BCP. Anyway, fast forward to about 2007 and my periods started to truly become unbearable. I managed to cope to a degree by using lots of painkillers - paracetamol and ibuprofen the same time, then cocodamol and mefanemic acid (sp?!). Every time I complained to various doctors about it, I got dismissed that my symptoms were normal. I stopped trying to get help.

During the intervening time I really deteriorated.. My family were begging me to go to the doctor and threatening to call an ambulance during my period as I'd be unable to move off the toilet during a BM and peeing during ovulation and my period was/is so excruciating my bladder is painful afterwards for hours - sometimes the first 24 hours of my period my bladder is just in fire the whole time. I was sleeping with my thighs elevated to take pressure off my underneath area/bladder. I also started to use a TENS machine.

Fast forward to December last year. I had my period and I just could not sit down at all I was in so much pain underneath. For me (even) it was the last straw. I managed to get an emergency GPs appointment. She did listen and examined me. I nearly shot off the couch it was so painful as I was still menstruating. Anyway, she said, given my history she'd send me for an ultrasound just to check there was no cyst or anything obvious, but that in her opinion I needed a laparoscopy.

I get the U/S done and the only new thing is my uterus has now retroverted. I go back to discuss but have to seem a different GP as mine is away. So I see this male GP and all he wants to do is put me on the pill! I said: look, I went on the pill you are suggesting when I was 12, and it did nothing for me. I was on Dianette for 10 years after being misdiagnosed with PCOS. After he looked back in my records he could see I was telling the truth and how I have been suffering for 22 years with menstrual issues. He agrees to refer me to a gynaecologist.

I get given an appointment at a community hospital with a GP who has a special interest in gynaecology. Waited ages for that. Anyway, see her, go over everything... She wants to put me on the pill! I just could not believe it. I felt it was such a waste of time. She decides to examine me - I was due on my period. By this point I am in pain all the time and cannot stand up for very long as the pain is so bad and I feel weak in my core as if something is pressing against my back. I can't sleep because of my lower back pain and I was getting away with it by sleeping on my front but then I suddenly couldn't do that either. She examines me an hethen totally changed her mind: I , need a laparoscopy and she suggests getting the mirena while having the op. I get her to change my meds. Thankfully if I take painkillers all month now I can sleep.

So I then have to wait for another appointment, this time tpiny surgical consultant. I see hi. He says he wants to give me a bowel MRI, then I should wait for another appointment to see him to discuss the results! I really felt so bizarre when he said this. I have a lot of other debilitating health problems and every time I have to go to an appointment it is so hard to prepare for and recover from. I thought I was going to discuss getting a laparoscopy (as the previous doctor had told me that!). So... I started to point out to him how this situation is affecting my life. I can't stand for more than a minute or two, I can't plan anything as I have to plan everything around period and ovulation. I get about Max 10 days in a month where I am not bleeding blah blah blah... And then he changes his mind! He's going to do the laparoscopy, I'm on the waiting list, but before I can have the surgery I have to have the bowel MRI.

So I would say that maybe in some areas of the country it is not easy to get one. I feel as if you really have to plan how to convey to them how this is blighting your life (and if you want to have a baby then use that angle too), and be prepared to fight your corner. Seeing as a laparoscopy is the only method of really seeing what is going on, I feel that we should be offered the chance of it, even if some of us decide not to take it up at that point because other options like hormonal therapy or painkillers are working.

Apologies for any typos, writing it on my phone.

[amybird]

It is both reassuring and depressing that other people seem to have so much trouble getting heard! Reassuring in that I am not alone but depressing as it seems it is the norm!

My symptoms aren't as bad as yours sound, which is why I felt like I was just being a wuss for so long. Essentially if I'm not on the pill then I get about 5 days of total exhaustion, then 10 days of heavy bleeding, exhuastion, pain when peeing, bloating (I have to have 2 different sizes of clothes), then 5 days recovering from that and getting back to normal and then a couple of days of sharp stabbing pains through ovulating.

It wasn't until my sister had a baby and was put on a different pill once it was born that I reaslied how bad it was. She was moaning to me that the pill was making her have really horrible periods and it was so bad she was having to change every hour. When I told her that was normal for me, plus I had to use a tampon and towels, and change about every half an hour, she was in shock. She told me that was not normal and couldn;t believe I had been putting up with it for so long. Problem is (despite what men think), its not something you openly discuss with others so how do you know what is "normal"?

I am very lucky that I have found the mini pill to work so well for me. It has stopped my periods completly so I don't get any symptoms anymore. But if I now have to come off it to try and get pregnant sooner rather than later, and I have fertility issues so it takes a long time, I don;t know how I'm going to cope with the symptoms coming back.

What has brought all of this up is that i came off the pill about 3 weeks ago to see how long it would take to regulate my periods as I want to try for a baby next year or year after (my partner is unsure).

Last week I got the extreme tirdness again and a stabbing pain that was worse than I had ever had it and lasted for 4 days. This prompted me to go on-line to see if I should be going to the hospital or not (thought I may have apendicitis). It was this google search that brought up endo. I had never heard it before. Numuerous trips to the doctors and a gyne referrel and it had never come up. ALL of the symptoms fit so I was surprised, hence my trip to the doctor yesterday.

So I guess I now have a fight on my hands to get the laraposcopy, which I am expecting as last time I had to argue just to get an ultrsound!

[Mabes in reply to amybird]

I think if you stay off the pill, you'll have more chance of persuading them. The pill, in essence, seems to halt endo where it's at (which is why they want us on it) plus using it continually limits the number of bleeds making it more bearable than having a regular period. Obviously you need to be off it to have a child and I can also understand wanting to be off it to see what's going on.

One thing I would suggest is asking your GP to prescribe Tranexamic Acid - if appropriate. This is taken during the heaviest days of your period and it should help to lighten your bleeding so that it is more bearable and possibly shorter. I couldn't believe I'd never been offered it until I saw the gynae GP. I use night time pads day and night, bleed for 10 days and also round ovulation and no one suggested it.

If you are bleeding a lot, I'd also ask be checked for anaemia, as being anaemic will just make the exhaustion worse.

I agree about the whole 'normal' thing. I was brought up around a mother who had awful periods. She was so used to it, it was her normal. My sister also has always had bad ones and so when mine were heavy, irregular, very painful and so on, I just assumed this was how it was. It was not until I met one of my closest friends and observed her having 3 day periods that didn't disrupt her life nor cause more than ibuprofen level pain that I realised what I experienced was probably either abnormal or (before it became really unbearable/with the bowel/bladder issues) on the far edge of normal.

I also agree with impatient - from what I've always understood, surgery won't necessarily impact the energy issue. I think I'd view it more as a diagnostic tool that should help relieve pain if they are able to find and deal with any areas of endo.

[Impatient]

Even with surgery - it didn't help with my fatigue/exhaustion. i am pretty much pain free for the time being most of the time - but nothing i have done or tried makes a dent in the fatigue side of things. that side of endo is a huge issue for so many of us. Tiredness doesn't hurt bu my goodness it is debilitating and affects everything you try and do.

[Seaside1]

Hi there,

I feel for you as am in a similar situation, fertility issues, have a BU and endo and PCOS. As Impatient said the BU does not cause the pain/endo symptoms. My endo surgeon has confirmed this. The pain/fatigue etc is coming from the endo. So your doctor is wrong and you should definitely pursue a lap as that is the only way to get true confirmation that you have endo and where it is located. Ask for a lap and if your GP refuses then see a different GP as you will need a referral to a gyne to be booked in for a lap. Best if you could get referred to an accredited endo centre as they have expertise in this area. Unfortunately in my own experience I was referred to an nhs general gyne surgeon who performed a lap and said I had no endo. Completely not true as I decided to go private three years later and the private endo surgeon confirmed endo as the explanation as to why I had chronic pain, fatigue etc for over 10 years. He also diagnosed the BU that the previous surgeon had missed (I can't understand how!) So best to have your lap at an accredited endo place or with a surgeon who has a special interest in endo, not a general one who may or may not diagnose you properly. All the very best and if you ever want to chat further please feel free to private message me anytime. Good luck xx

[amybird]

Thank you for the replies. I have been going through this for 5 years and seem to have been prescribed everything already mentioned, transemic acid, pills that stop you bleeding (can't remember the name), mirena coil etc. I have been referred by my gp but with the warning I may not get anything. I think she was just trying to be realistic which I appreciate but I'm just trying to deal with the potential fertility problem news now so anything they can do I want! I looked at private but my work bupa deal won't cover chronic or pre existing conditions and I expect a laraposcopy will be a lot of money privately.

I will go to the referral and prepare to fight my corner!