Can I request a laparoscopy on the NHS?

[lilmeisha]

We have recently had a 3rd failed IVF cycle on the NHS. I was diagnosed with PCOS as the reason for infertility. I have always had extremely painful periods but just assumed it was because of the PCOS. Having exhausted IVF options, I find myself looking into other causes and options, and I am stunned at how many of my symptoms fit with endometriosis. We have not yet been given a follow up appointment to discuss the failed cycle but I would like to know if I can request a diagnostic laparoscopy? If I can't have children, I would at least not like to suffer every month. Thank you x

[DSan]

Hi, I've been through my first ivf cycle just recently. Had to pay as I am over 40 and have one child who is almost ten. Just wondering, did your ivf consultant or sonographers notice endometriosis on your ovaries- if it's that that you think is the cause of your infertility? How far along did you get in your ivf cycles? My ivf consultant noticed small endometriomas on my ovaries during egg collection. I had already been diagnosed with endo before my ivf cycle.

[lilmeisha in reply to DSan]

Hi, thanks for replying. No one said anything to me about endometriosis. I remember asking about it at my very first consultation appointment but as soon as I was scanned, and they saw that my ovaries were polycystic, the consultant said that was the reason for the problems conceiving. Maybe they only like one issue to deal with?! My egg collection has always been done by different people each time, as we have had to have treatment via a satellite clinic but I thought the only way to confirm endo was with a laparoscopy? I have always started bleeding before the test date, so I felt like implantation/embryo quality was a problem. We paid for killer cells testing (slight elavation but not huge) and I took steroids on our last cycle but it still didn't work. I don't feel like I have ever had continuity of care and during scans, it seems like they just forget you are even there! I guess that's the NHS for you, you are given the bare minimum. We can't afford to pay for private treatment so I feel very lost right now. I'm 36 and just wondered if the NHS write you off after failed IVF treatment and don't consider that you need any further tests or investigations. X

[DSan]

Hi, I would keep badgering your gp for a referral for a lap which yes is the only way for a sure diagnosis. I think it is possible to have pcos and endo together. Asked to be referred to BSGE centre, in fact look this up and see where the nearest one is to you. I hope this helps and you find a resolution soon. xxx

[lilmeisha in reply to DSan]

Thank you. I think I will ask at the follow up appointment and if they don't help, I'll go back to my GP. I looked up where the BSGE centres are and there is one local to me. Good luck with your treatment and I wish you the best of luck xxx

[Scooteeder]

Dear "lilmeisha",

I'm SO sorry to hear what you've been through. I know that doesn't really change things, and probably sounds like empty words... but I can empathize.

I'm 43 now, and I have no children. I do have a diagnosis of Endo. It took me many years of going backwards and forwards to my G.P. before anyone even bothered to take me seriously. Did you know, on average, it takes a women 7 years to get a correct diagnosis of Endo? We have to really go through the "mill" before anything gets sorted!

My case sounds quite similar to yours. I had heavy & painful periods as a teenager - but that was way back in the 1980s and nothing really got investigated. My G.P. put me on the Pill for a while to see if it would regulate my periods - but all it did was give me spots, and make me feel bloated! No success there!

Things improved for a short while in my 20s, but I wasn't in a position to consider having kids then (I dated a guy I met at University for nearly five years, who could never make his mind up about commitment - one minute he wanted to get engaged, the next he was saying he was too young!). I also had a lot of family problems as I was growing up (I have a parent with long term health issues), so I was enjoying my freedom away from home too much to want to start a family early! My own mum had really bad problems during pregnancy (very ill - had to be hospitalized, suffering calcium deficiency and other problems - I was born a "blue baby") so this put me off quite a bit.

My menstrual problems came back with a vengeance in 2002 (I was 31). By then, I was happy with a long term fiance, and had thought about kids and marriage. However, I was in so much pain and felt so ill, that I just wanted to be "sorted" before trying to get pregnant. My G.P. didn't refer me to a Gynae until 2006,. by which time my symptoms were much worse, and I was finding sex very painful - so unable to conceive.

My Gynae was utterly hopeless! He was rude and incompetent. He felt that I could not get pregnant due to "stress" (NO idea how that explained all my other symptoms!) - then I had an ultrasound, and he incorrectly diagnosed me with PCOS! I think there were cysts on my ovaries; but these could just have easily been the "chocolate cysts" of Endo. Endo DOES NOT usually show on ultrasound scans.

My pathetic Gynae was often absent from work, so I rarely saw him at appointments. He did not even bother to treat my PCOS. The only thing I was put under pressure to do was choose between symptom/pain control, and my fertility! Because I had no idea what was going on, or what was causing all my symptoms (a junior doctor I saw said he did not feel I had PCOS as I had none of the usual symptoms) I was scared to consider pregnancy. I'd been told also I had a retroverted uterus (fixed in a tilted back position), which made me wonder if pregnancy/birth would be more difficult. Also, I was in far too much pain to consider it properly - I also had LOTS of other symptoms including bloating, water retention, clots in my periods, lower back and pelvic pain, nausea, fatigue, and diarrhoea (all worst around my period). So, I didn't feel up to getting preggers!

In 2008 I had a hysteroscopy with D&C, and a colonoscopy to try to get to the heart of my problems (I was lucky to have seen a locum Gynae who arranged this!). After the procedures, letters were sent to my usual Gynae, and to my G.P. suggesting I had ENDO - but these were ignored! It was not until I desperately sought a second opinion in 2010 that things changed. The new Gynae I saw immediately mentioned Endo, and booked me in for a lap.

I had my first laparoscopy in 2011. Sadly, the Hospital failed to remove all my Endo. I have both superficial Endo, that they lazered away, but also deep infiltrating Endo (that they missed). I was so angry I demanded referral to an Endo Specialist who I found on the internet! I've since had 3 further laps! Things are not ideal, but I'm coping!

I'd suggest you push like crazy for a lap. Endo can be so easily missed! Many G.P.s and basic Gynaes are not familiar with Endo, and confuse it for other illnesses. For more info on Endo symptoms and where it can occur in the body, read

endo-resolved.com/symptoms....

Endo can really mess with your fertility, especially if it causes adhesions (sticky scarring and fibrous growths that stick organs together). In my case, I didn't even feel able to consider pregnancy until I was sure what was causing my problems. I dis not wish to put a baby at risk! I really do thing Gynaes should rule out EVERYTHING they can, to try to minimize risks for women having IVF - that way, things might end up in less disappointment.

Endo can be superficial, or deep. It is NOT the amount of Endo that causes pain and other symptoms - it is where it grows, and what type it is. Superficial just grows on the surface, and can be lazered away. Deep infiltrating Endo (which is what I have - in my utero-sacral ligaments and pouch of douglas) is harder to deal with as it grows INSIDE muscles, tissues, etc. It can cause very painful nodules and is more difficult to remove, often needing extensive surgery. To read up on different types of Endo, see

safe-endo.com.au/Whatisendo...

DO consider a referral to a specialist. You may have to pester your G.P. for this. It might help to keep a record of all your symptoms, and any treatment you try (along with whether it is successful or not) - take this to appointments to show your G.P. that your problems are NOT well-managed, and as proof that you cannot continue to go on like this. This could be just the evidence you need to insist upon referral. To find an Endo specialist in your area, go to this site

bsge.org.uk/ec-BSGE-accredi...

Sorry my reply is so long. I really DO hope there is something here that helps. Don't give up. Keep pushing for answers - it's your body and YOUR health! And, if ever you are feeling down, or need to ask more about Endo or related Gynae issues, you can always come back to this Forum - there are lots of women here who are willing to listen, and want to help. You're NOT on your own!

Best wishes,

Elaine. x