Best questions to ask endo specialist? (sorry for long post)

[Tutsie]

I had my diagnostic lap in Feb, follow up appointment a couple of weeks ago and was referred to the endo specialist (accredited centre) who I see on Monday. I didn't expect the appt to come through so quickly.

The findings of my lap:

Severe pelvic endo with a frozen Pelvis involving the rectovaginal pouch and the pouch of douglas.

Left ovarian endometrioma

Abnormal attachments to right pelvic wall.

Twisted ovarian pedicle on left side but no evidence of necrosis

Right ovary appeared normal but deeply involved in adhesions involving bowel and fallopian tubes

Fimbrial ends of fallopian tubes unable to be seen clearly as they were deeply embedded in adhesions

(No surgery done to treat the problems due to their complexities)

I would like to be better armed at my appointment on Monday - at my follow up I was hopeless and didn't even ask if I had anything done during the lap, I wrote to them afterwards - unfortunately due to lack of child care I need to attend the appointment on my own so I won't have another set of ears or someone else to think of questions to ask on the spot. I really want to be prepared and armed.

I'm looking for some advice about the right type of questions to ask. I have written down a list of the above and will ask him to explain what each of them mean and what the treatment options. (and take notes!)

I don't think I will be fobbed off, but is there anything that is commonly offered that I shouldn't be accepting as "treatment" at this stage? At my first gynae appointment, I was told to go away for 6 months and keep a pain diary which I did without hesitation because I didn't know better. I am worried that I will be told to do something and I will be unknowingly delaying the inevitable for 6 months if that makes sense.

And if you have read this far, thank you! Any advice would be very helpful xx

[CharlieSays]

HI, I had my follow-up last week and went with a list of questions, as I tend to forget everything too! I think the most important thing to consider before you go, is what sort of treatment you would be happiest with. If there's maybe a couple of options (I know from my lap they would probably offer Mirena coil, GNRH injections or hysterectomy), do a bit of research on the drawbacks so you can ask questions about anything that worries you. As to treatment types, from reading other womens' posts, I don't think there is any right or wrong one - it all depends on the severity of your endo, your symptoms, what you've tried before, any other health issues, whether or not having children is an issue etc. I've been fobbed off a lot in the past before being taken seriously - hopefully if you're seeing an Endo Specialist this shouldnt happen, but remember that you're the one who has to live with it, so if you're not happy with what is suggested, you have every right to refuse! Good luck!

[Tutsie in reply to CharlieSays]

Thank you Charlie How do you know that they would offer Mirena Coil, GNRH injections or hysterectomy based on your lap? Is there something specific that would make those viable treatment options? (Sorry, I am really new to endo diagnosis and researching the treatments)

I just don't know all of the available treatment options available. I feel like I'm in a bit of a catch 22 situation where I need to go to the appointment to be told what options are available in order to research them prior to the appointment to find out the drawbacks if that makes sense. It's so overwhelming.

[CharlieSays in reply to Tutsie]

It can be overwhelming - I feel like that sometimes and I'm so glad I found this forum. Those 3 options were mentioned to me when I came round from my lap, when I was still groggy!. I'd already had Prostap injections before I was diagnosed (to reduce some cysts) so they knew that worked ok for me. At my follow up, the gynae said that hysterectomy would be very risky for me as my ovaries, womb and bowel are stuck together, so I've gone back on Prostap for a year to see how I get on, this time with HRT. I wasnt offered Mirena, but after reading posts on here I wasnt keen on it anyway. Basically, because my endo can't be removed, they are trying to stop it increasing by shutting my ovaries down for awhile. I think maybe you should just do a search on here on the most common treatments so you at least have some knowledge about what is suggested. The NHS Choices website has some info on the treatment routes they tend to favour too. Endometriosis UK has various downloadable leaflets. And I know its easy to say this (but not so easy to do when you're at your appointment!) but DO ask them to explain if you don't understand the implications of what is being suggested to you.

[Tutsie in reply to CharlieSays]

Excellent, thanks Charlie. I will check out NHS Choices and Endo UK websites for the leaflets. It is all incredibly difficult because obviously what works for one of us doesn't necessarily mean it will work for someone else so I really want to be as knowlegable as possible on anything they might suggest! I only came across these forums last week and it does seem incredibly helpful. It is so good to hear about the experiences of other people. I feel very lost with what I can and can't refuse, etc.

[Impatient]

Hi Tutsie - you have a lot going on there - Severe endo stage 4 if ever I saw it.

And yes you most definitely need surgery and sooner rather than later - so I would not be accepting GnRH at this stage. Which would just be delaying the inevitable.

First decision is how important is fertility to you, have you had your family yet or not?

Do you have an all emcompassing desire to preserve your fertility or could you happily forfeit one ovary? You should always aim to keep one in there as that will keep you from being on HRT for ever and a day - every day.

rectovaginal pouch and the pouch of douglas are one and the same location -What we commonly call the POD on this forum.

A frozen pelvis - basically means there are adhesions everywhere sticking everything to everything else. And that is borne out but the subsequent list of things embedded in adhesions.

The surgery will allow for the cut back most of the adhesions and free up all the organs that are currently stuck together, adhesions wrapped around the ovaries can be cut away too

But adhesions blocking the ends of the fallopians is not going to be easy to resolve and as things stand at this moment - you are probably looking at requiring IVF in order to bypass the blockage should you intend on baby making.

It seems the adhesions are a big enough job in themselves.

And cutting them back and inserting barriers to try and stop organs sticking together for a bit longer is one thing they will do - but adhesions will always grow again.

You might want to discuss having an HSG done which is injecting dye through your tubes to see if they are still open or now blocked off completely.

You also have to consider after the op, what steps you want to take to try and reduce the spread of new endo - once the old endo is removed.

This would be a bigger issue if you tubes are still open.

If they are blocked by adhesions that does prevent new endo spreading from the uterus in backflow bleeding, which is one benefit of the blockages.

You may want to stop your periods and period pains and PMT on a longer term basis in which case getting the mirena coil inserted during this op is definitely high on the agenda too. It is much easier to get it properly fitted while you are knocked out with general anaesthetic and know nothing about it, plus the morphine they give you after the op will keep any vaginal pain under control. IF you don't get this done under anaesthetic when you have the chance, then you can still have it put in but usually without general anaesthtic, and that can be a very painful process for anyone riddled with adhesions as you are.

another element you might want to discuss is the likelyhood that this op will actually require a laparotomy or big hole , rather than key hole.

This is something which will require a much longer post op recovery, if you work then would require considerably more sick leave and impact on your finances and anyone you co-habit with having to care for you in the basics like carrying shopping bags and driving car etc.

8 weeks till you are able to drive because with your tummy muscles cut you just don't have the strength (let alone the pain your are in,) to operate a car safely, so you would need to make arrangements for assistance for that time frame at least.

If there are impediments for you to have a big hole op - then you would need to tell the surgeon that on no account are you yet ready for a big hole recovery, and to do what they can with the keyhole procedure this time round - and save the more complex aspects till you are better set up for the longer recovery in the future.

Obviously the more surgeries you have the more adhesions you will have after so such a decision while it may seem straightforward does have consequences either way, that you need to give thought to. The more ops youhave the greater your exposure to the risks associated with any surgery too. I would advise you try and get as much done in the one op even if that does mean a laparotomy.

Take in your questions written down to remind you - and also take notes too so you don't forget the critical parts of the discussion. If you can have a second pair of ears with you (mum sister best friend) then by all means take someone with you to help try and remember what is said.

Your consultant will ask you a load of questions too and probably hand you a pile of NHS info leaflets to read up on.

Your case is pretty similar to mine - I did have more going on than you do and my lap op did turn in to laparotomy - recovery was about 4-5 months till I could confidently say the post op pains were gone - and I had enough strength in the tummy to lift up small toddler. Tummy strength continued to improve over the following year. it's fine now back to as good as it ever was in my opinion. And I did have the mirena put in too at that big op...and has transformed my life - no understatement there at all. Quite liberating to no longer have periods.

Hopefully that has given you some ideas to think about and research before the appointment date and you can write down some questions you may want to discuss with the consultant. Keep a note book with you at all times - you never know when a question will pop in to your head.

[Tutsie in reply to Impatient]

Thank you, that was an amazingly helpful and insightful answer. Between you and Charlie I feel that I at least have a really good starting point at looking in to treatment options and what they mean. And I even understand some of what is going on from your answer, I had no idea what a frozen pelvis was - my sister just suggested that I heat it up with a hot water bottle and poop out of my vagina. (She is 40...<3)

With regards to fertility I think I have accepted that my 2 year old is my lot in life. I would so much rather have a better quality of life and be able to play with him on demand rather than how it is currently. The fatigue alone makes every day a battle. All of the problems became apparent during pregnancy and after birth. My partner is 42 at the moment so he kind of feels that by the time a second birth came round he would be too old, so I would be okay with them needing to take some of it away if necessary.

I am happy with the idea of the mirena coil - I will need to do a bit of looking up at what it is and what it involves I think!

I think we are resigned to the fact that any operation is likely to be a big one, I would prefer to have as much done in one go as possible. I do work part time and they are being super supportive of me, but I do feel that I want as much dealt with in one go. We are quite isolated where we are at the moment in terms of family and friends surrounding us, so mum has offered to come down and stay a week after any op and then she will take my son and I up to scotland for the duration of the bulk of my recovery. That way the little one has uncles and aunts and cousins and grandparents on standby. My child minder has also offered to halve the fees for the duration of my recovery so I wouldn't need to worry too much about financial implications. I feel that I am trying to combat as much as I can prior to any news, prepare for the worst case scenario and then anything that doesn't come to worst case scenario is going to be a nice bonus.

It is encouraging to read that you had a similar case and how the coil has transformed your life, it gives me hope that things won't always feel this bad. Thank you.