A glimmer of hope (again)!

The nutritionist

Rosie and I went to see another nutritionist. We had hoped to stick with the same one we had back in October, but it was not to be. She did manage to send through some recommendations though and last Sunday evening I went through the options. Unfortunately, (and for various reasons) none were suitable, so the search continued with that multi-coloured search engine. I came across someone in Fife who seemed reasonable in price and whose biography was enough to catch the eye. I wasn’t convinced about the situation and thought it was be another dead end, but we needed an option and there it was.

But…!!!

It wasn’t. We were at the nutritionist’s house for around an hour and a half. In that time, we had answers to all the questions we had, another direction to try and a second appointment in a months’ time.

Auto-immune condition

Apparently, Endometriosis is similar to an auto-immune disorder. This means that the body gets confused and starts attacking the healthy cells. Endometriosis is also an inflammatory condition which is why it is likened to an auto-immune disorder. For me there is inflammation around the ovaries and the womb and that is where half of my problems lie. There is still a lot of research being done on this particular idea but I am sure in time there will be more information. In the short term we know what I have just said.

What does that mean?

In simple terms it means I have a ten foot fire inside of me. Eating the current foods that I eat means the fire goes up to twenty or thirty foot. This in turn inflames the body which does not help the body recover. However, and here is the good news. If I change the food, I eat I can bring down this fire to one foot. Just by eating a different diet I can make the change so the fire burns at one foot rather than thirty feet. Now that is a brain puzzle!

What do I have to do (dairy and gluten)?

There are several things that I need to do. The first is give up dairy which I have already started to do. This in turn has already started to bring down the inflammation markers in my body. The second thing is to go gluten free (again). I know I tried it and didn’t get on with it but I need to give it a longer time to work.

However…

However, the nutritionist has said that I have not only to go gluten free, but I must avoid gluten and gluten contaminates. Even a crumb is enough to make my bodies inflammation markers rise. Let me explain: I can eat gluten free porridge oats, but I cannot have normal porridge oats. The normal porridge oats are in themselves gluten free, but they hang out in a field where wheat could have been and hey presto, they get contaminated. This means they are no good for someone like me.  

What do I have to do (the rest)?

I also must make sure that I finish eating by 1900 in the evening and have a better bedtime routine involving Epsom salts. The Epsom salts will help take the toxins out of my body which is good, and I will also feel sleepy after doing this. I have also to eat lots more fruit and vegetables to make sure I am getting the right vitamins and nutrients. Along with that I must eat flaxseed everyday and add to smoothies all anti-inflammatory foods like ginger, garlic and turmeric. All of this will help bring down the inflammation surrounding my insides. Drinking more water is on the cards as well. Eating pork and any processed foods is out. So, no more bacon, sausages and ham sandwiches.

The sugar and the protein monsters

Taking out a lot of processed foods means there will be a lot less sugar that goes through me. I am allowed dark chocolate still, but I have to keep an eye on my proteins. From what I understood the sugar monster runs around the body causing havoc. Once protein has been consumed they eat the sugar monsters. The body will then have to find other sources to snack on, i.e. fat. This will in turn make me lose weight.

Inflammation surrounding the ovaries

Oestrogen at the minute in my body is being a bully and it is inflaming the ovaries and womb. Now here is the good news. If I can change my diet it will start to bring down the inflammation surrounding my ovaries. This means they will cope a lot better. There is some suggestion I will reduce the need for another emergency surgery to deal with the ovarian cysts too. There is also some hope that if there is a good egg in one of the ovaries then it will be looked after by the oestrogen. They will become friends rather than enemies. This in turn could be the egg that allows us to have a child.

Hard work

Yes, it will be very hard work. My diet needs another re-vamp, I will need to be a lot more organised with making food and I will need to keep track on what is being eaten. However, the good news is there could be weight loss, a lot less inflammation both on the inside and outside of my body and even better is there could be a golden egg in there with the start of our dream on it.

Jaded

After seeing out NHS consultant last September I became very jaded by the whole experience. I am now known to judge medical professionals and “size them up” before I let them in on who Helen is. Today I still have my moments when I am more negative than positive about the situation as well. I am sure time will help sort some of this as well.

Lucky

I am just very glad and very lucky that we could have the opportunity to consult with private IVF consultants and nutritionists so we have the answers to some of these questions. Had we not done this then we would have got around to August and still not been ready for the IVF waiting list. This would have meant we would have been kicked out of the service to “sort it out” then would have had to go back to our GP to start the whole process again. I am aware there is a long way to go still but we have a glimmer of hope that will take Rosie and me to the next point or decision. Hopefully in the next few months we will be ready for the next step. What we do know is that there are now people around helping us to get there.

IVF update

We have had another visit to our IVF consultant over the last few days. The basics are we need to keep losing weight to get into the service. The good side is we have made a good start. The bad news is that instead of 90kg which was originally stated we need to get to 88kg. The 90kg was for all the tests for further investigations. As we have skipped that step now (having had it completed in December during the surgery) we now have a slightly different goal.

The injection

The other downside is that I was apparently meant to keep having the injections to shut down my ovaries and pop me into a menopause. Doing this allows the body the best chance of getting into the IVF procedure. I also now have to start taking H.R.T to make sure my symptoms from the injection don’t cause me too many issues. The joys of it all!!!

The nutritionist’s information

If anyone is in a similar boat we recommend the Food Physio who is based in Fife. Details can be found here.

-Helen

A quiet kind of calm

IVF Update

Rosie and I went to the yet another specialist with regards to our IVF journey. This time it was in the private sector. We had decided we would try all avenues so it made sense for us to try this too. I admit that you pay for what you get. We got a doctor who knew what he was talking about which is always a good start. Rosie and I could ask any questions to him even if they did seem silly. He was patient and spent time with us. A big thing for us was he acknowledged Rosie as much as a potential parent as I would be. We felt when we visited the NHS doctor they didn’t really see us as a “proper couple and potential parents”.

The bad and the good news

However, with all the facts our doctor also gave us some good news and then bad news. The good news if that I have a lot of eggs in the ovaries. The bad is that the quality of them with Endometriosis is not good. The figures he had were even less appealing. With an IUI procedure there is an 8% chance of it resulting in a pregnancy. Apparently even less if it was to be done naturally with a man (luckily this option is a definite no go but always good to know all the facts and it made Rosie and I laugh!!!). With IVF there is a 50% chance. If you haven’t guessed already it looks like we are heading straight to the IVF route.

Natural

This is the question. Rosie and I had wanted to try the IUI procedure as it is a lot less invasive than IVF. With IUI (intrauterine insemination) the washed and concentrated sperm is put straight into the womb around the time of the egg release from the ovary. As I like to say it sends the swimmers in and hopes for the best.

Or not so natural

With IVF (in vitro fertilisation) it is an entirely different procedure and unfortunately one that is invasive with many different steps. With IVF you need to stimulate the ovaries, retrieve the eggs, add the sperm, wait for fertilisation and an embryo to develop before putting everything back into the womb and finally having a blood test to see if it a positive transaction. Again in my words, more hurdles, hoops, obstacles, lots of prodding and poking and then hoping for the best.

Endometriosis

One interesting point the private doctor mentioned was about Endometriosis Grading. Grading? We didn’t know it had a grade! From what we had told the doctor he suspects my grade to be at least a 2 if not a 3 out of 4. In other words, not good news while trying to get pregnant. It is still worth trying IVF which is positive. Also on the plus side, when the egg retrieval specialists go in to look for eggs they will be able to determine the good and bad. With the good eggs there is a chance these can be kept and frozen for the next round. Again some good news but we will not know anything further until we get there.

Where does that leave us?

So, where does that leave us? It is a good question. Yes, we could go down the private route. Rosie and I feel we would both be looked after from the start too. However, if you rack up the costs for one round of IVF privately you are looking at re-mortgaging the house or robbing a bank. And that is for one round only. One! Not quite the options we were looking for.

The short answer

The short answer is I have to keep working to get my BMI number down so we can go on to the wait list with the NHS. That is it. Keep working, jumping over hurdles, trying to avoid the obstacles, going through the hoops which I am sure make sense somewhere and most of all keep hoping. In that recent film about being “frozen” with a “singing snowman” the song lyrics states “this will all make sense when I am older”. You can’t argue with a singing snowman either!

Personally

As a partnership we are incredibly strong but I would be lying if I said it wasn’t taking its toll on Rosie and me. We try not to let it put us down but when you are trying to achieve a dream you take it a lot more personally. I get frustrated that it is not a straight forward system and hard work is not being noticed. Rosie is constantly asking what she can do to make it easier (there’s not much unfortunately). As I have said before it feels like we are being punished for living our lives in a different way. We get angry, upset, tired, confused, anxious and the list could go on.

We will not give in!

Finally we try to find answers and ask questions which will one day lead us to the front of the IVF queue. We have come this far and have even further to go. We will not give in. One day it is going to make sense but right now we are in that quiet kind of calm while we process and prepare for the next part.

-Helen

Frustrating!

Why does life have to be so frustrating?! I mean sometimes we are only trying to get from point A to point B. In the way there are obstacles, hoops, wrong phone numbers, people who are no help at all. You find yourself three steps backwards and feeling down from doing such a simple task.

Customer Service

Now I could talk about customer service for hours and hours. However, for the point of this blog I will keep it short. Having worked in many a customer service role you could say I have a fair amount of experience. I also have a lot of people experience.

My current line of work

In my current line of work I deal with people who comes from all walks of life, from different careers, who have different illnesses or mental health conditions, who have different fitness goals and different life goals. Everyone in my book is treated with respect. A seven letter word that means so much but is quite often forgotten about, don’t you think? My point is with everyone I met I try to display professionalism, friendliness and a quirky sense of humour. The bottom line is that in my book everyone is treated the same. I try to give the best customer service that I can give.

When it goes bad!

I struggle when I have a big problem to solve and no one out of a customer service role is ready to help me. May be I am asking too much but then again may be I am not.

Let me paint you the picture!

Let me do just that. There is one more test I need to do for the IVF criteria and it something called a HyCoSy scan. Google can fill you in. In order to do this I need to have a Mirena coil removed.

Too many phone calls!

First of all I called my local GP but no, they apparently do not do such things. I was given another number to phone. But that number wasn’t recognised. I then got on to Google and had a search around other practices in the area to help us. But there were no phone numbers that I could see on their website. I tried the one number I could get and got through. But again no, they apparently stopped doing coil removal earlier this year. I was given yet another number. My poor phone was beginning to wonder what it had done to be calling so many different people. I got through to the last number and the lady asked had I spoken to the GP. My exact words were something like, “I have and they don’t do it, I have been sent on a wild goose chase, can you help?”.

I finally got a date!

After a few questions and a few calendar dates I finally have a date. It took about an hour to do all of that but I finally made it to the end. And here is my point. Did it really have to be that challenging to do such a simple thing?!

IVF

To me this is just another hoop we need to get through with a few obstacles thrown in. It is like we are being tested to make sure we are ready to progress down the children route. It is frustrating, it is challenging and it is darn right annoying as well. To do something so simple, which is to have children of my own, I need to go through many, many hoops.

What else do they want from me?

Exactly that. I have changed my diet, changed it again and finally changed it so it makes even more sense. I now eat a lot more than I did. The first few weeks were nerve-racking and scary while I looked at the amount I had to get through. Now I willingly make my own breakfasts and lunches making sure I have the correct meals and snacks. Admitting it now that I do like to snack. My appetite is back and I am not hangry as often. We have discovered that I have more muscle than fat and that is what is making my BMI and weight loss is challenging.

What else?

I changed my exercise regime and now run. Run! I do many more gym classes. In the rain, the sun and the cold I train. I do exercise when I really want to sit on the couch and eat cake. I do my own research into how best to go forward with IUI or IVF. Rosie and I ring many different people to try and get an answer. We have become massive Google fans as well. We read articles, forums and much more just to see if there is anything else I can do except wait.

I know it will be worth it!

Now, I know in the end it will all be worth while but I am also aware we are going through many different hoops. A lot of hoops before we even get to the massive ones that IUI or IVF will throw at us. I know I will have a little rant and then pick myself up and carry on. I have a goal to get to and I am going to try my hardest to get there.

-Helen

IVF Update

I wanted to give you guys a bit of an update as we have had our next consultant appointment for IVF. The short answer is we are currently in a delay with no time frame. All the tests have back as excellent from the first round, but the downside is that sodden BMI. The long and short of it is, until the BMI comes down to the required number there is no proceeding forwards. End of discussion.

We are annoyed!

We were annoyed at that appointment for the following reasons.

One. The consultant we saw didn’t seem to have any bedside manner and it was all black and white. Now at the end of the day the consultant can close the file over, go home for tea and report back the next day to carry on working. Us on the other hand have the news that we must wait.

Two. Their weight scales and ours at home are 1.5 kg out. Now I get that scales are different but seriously, SERIOUSLY, 1.5kg is actually quite a lot at the end of the day. Again, when I tried to tell the consultant this their response was very matter of fact.

Three. From what we have been told by the nurse at the first appointment we attended to what we have been told by the consultant are two very different scenarios. Now is it too much to ask that when dealing with such a sensitive subject that all parties are on the same page?!

After the appointment

After the appointment we were both left very disappointed. There was anger, there were tears, there was no talking to anyone and so on. That general feeling when that one dream that you had was removed from the table. I am aware it is temporarily removed but at the time it did not feel like that. I have over the last couple of weeks come to terms that it is a delay rather than a straight no, but I still feel pretty angry and upset over the situation.

Why do I feel this?

I feel this way for many different reasons. We have decided to go via the NHS as we are aware that privately it can lead you into tens of thousands of pounds of money and it can sometimes mean re-mortgaging the house. I am also aware that people have set up fundraising pages for IVF. I don’t blame them for doing this but for us it again doesn’t seem like the right way forwards. I am also annoyed as I feel we were treated more like a number than a couple trying to get pregnant. I feel that the consultant may be didn’t know how to deal with a same sex couple. It isn’t as if we can go home and “practice” (although at this point it may be quicker!!!). And finally, I feel that we have put a lot of hard work to get to this point. I get the impression that until you reach the desired criteria numbers that anything else is just not acceptable. I mean it would not cost the NHS anything to say, “fantastic work guys, now you need to keep going, have your tired a, b or c…”. I find the personal approach goes a long way in these things, but I guess that is just me. So, there you go, there are my reasonings.

When I was 20

When I was 20 years old, I had some tests done at the GP. I then had a phone call calling me into the surgery to discuss. The receptionist couldn’t tell me over the phone why but in I went to find out what was happening. I was told that I had PCOS (Polycystic Ovary Syndrome). The likelihood of me becoming a mother was going to be tough to non-existent.

For more information on PCOS (Polycystic Ovary Syndrome) click here to take you through to the NHS website.

Now that was around 15 years ago. Today there are many, many things that can be done to help people with ovary issues. However, that feeling of having a dream of becoming a mother all your life and then it being taken away from you (or delayed when you are working hard) is not a nice one to have. I personally feel that medical staff need to be aware of these matters when dealing with such sensitive situations or information. If you get a doctor with a poor bed side manner, then I feel you are on the pathway to nowhere. As I have said at the end of the day, they get to close the hospital file and go home. You get to go home with a racing head, upset and angry.

The IVF Criteria

Now I am not just saying this as I have not got my way, but I personally feel the IVF criteria is out of date. I managed to rant to Rosie in about an hour with 22 new points I would like to add or change about the current system. I am open to anyone who is in charge of the IVF system in Scotland to meet me for coffee so I can explain. I understand in Scotland we are very lucky that as part of the NHS we get a free go at the procedure but still I feel we need to think about these criteria.

Please note, in England we were turned down from moving forward with IVF as we were not in a borough which supported it. The fact we were a same sex couple was not a sufficient point for them. We were told we either had to move to a different borough or pay for it.

In the meantime

In the meantime, we are researching any other ways to go forwards and any options we may have missed. Going to any information evenings that we can to make sure we are up to speed with any latest developments. We are also making sure our weight keeps coming down and we remain active.

The conclusion

So, we are currently in a delay until our weight comes down and the BMI is the correct one for the IVF criteria. Only at this point can we begin more rounds of tests and eventually get into the service. We have estimated it could be at least another year before the actual IVF begins and possibly another 2-3 years before we can bring a child home and call it our own.

My advice to anyone else going through something similar. Speak to your friends, family, loved ones. Don’t keep it bottled up. Be active and look after yourself. As my Dad often says “what is for you will not pass you by”.

-Helen