Endometriosis- an update

Hello everyone,

So as some of you may have seen in previous posts, I had a meeting with the bowel & endo specialist on Wednesday (The same one who during our last meeting was totally unhelpful & was the cause of that very depressing post I wrote after). I did not hold out much hope for this second meeting- & it turns out I was right not to. The only reason I was seeing him was because my GP had written a strongly worded letter telling him that I needed to be treated properly.

I am not a medical professional but I know when I am being fobbed off. He obviously hadn't read the report from my surgery as he commented "Well it can't be the endometriosis causing the problem as we did remove some of it & it obviously hasn't helped". No, they removed a tiny amount for biopsy as it was TOO DANGEROUS to remove more (due to bleeding, my oxygen levels dropping ect). He avoided discussing my questions (such as what treatment is there?) & told me he was just going to refer me back to my GP who could decide my treatment. What a nice, helpful doctor!

So meantime I am stuck with no end of problems, I am not ovulating so I don't even know if I can have kids, I am in constant pain & now have the stress of waiting. I know my GP will not be happy with the way I have been treated by this particular doctor (again!). She has been fantastic through all of this, & I know she will do everything possible to get me the treatment I need. But in the meantime I am still suffering & it isn't fair.

On a more cheerful note at least now I can say that hopefully I will be referred to somewhere that I can actually get treated, & until then I will keep my chin up. I am still pretty poorly from my chest infection, but it is very slowly getting better (finally!) & am just taking each day as it comes.

On a slightly different note I want to say thankyou to someone. I am a member of the Health Unlocked Endometriosis UK support forum. Its basically a page where women who suffer from endometriosis can go to get advice, share experiences & generally support each other. I won't mention names but there is one particular person who I have been chatting to for a while now, & consider her a friend. Every day I always get a message asking how I am & how I am feeling, & its just nice to be able to chat, talk through the ups & downs, & to help eachother out. So thankyou :)

Hope you all have a good week. I'm doing a few new posts this week so watch this space! Thanks for reading! Xxx

A very busy month!!!

Hello lovelies!!!

It's been almost a month since my last post, but this isn't down to laziness,  I promise :)
The last few weeks have been crazy busy- birthdays, endless hospital appointments, travelling & some personal changes. It's not been easy- & I'm hoping that this next few weeks will see things slow down as I am absolutely exhausted.

So the first thing is I turned 20 a couple of weeks ago. This for me was kind of a big deal as it really bought home just how fast time passes. 2 days before my birthday I was worried that I'd be in hospital for my 20th as I ended up being rushed to A&E with chest pains again (I got released the next day being told it might be the endometriosis spreading to my chest & that I needed to go back & see the consultant as soon as possible). My birthday itself was nice- just a small party with family & friends. I went up North to my grandparent's that weekend & had a nice shopping spree in Liverpool (more about that in another post!).

The second thing is all of the hospital appointments- I am having hand therapy at the moment & have 1 session per week. Me & the hand therapist have both agreed that I'm not benefitting from it, but I want to go through with it so that I can at least tell the consultant I tried. It is a shame as I was hoping it would help, & I am really now hoping that the hand consultant will be able to do something. I've also had various other appointments- general checkups, blood tests, medication reviews ect... the list goes on.

I have received an appointment to see the bowel specialist again on the 3rd of September (let's hope that this time he will actually try to help me instead of fobbing me off!) It rather annoyed me when the hospital rang to offer me the appointment though, as they told me on the phone that there was no record of him having the previous appointment with me (no notes from clinic, not even the supposed refferal to pain management which he tried to fob me off with). There was also no record of him having received or reviewed my laparoscopy results- as you can imagine I was fuming. This was the same man who sat there & told me he didn't want to treat me & was just going to send me to pain management! The lady on the phone was sympathetic & agreed that it was appauling- for someone who has stage 4 endometriosis, they should be doing alot more to ensure I get the correct treatment & help.

Rant over anyway! A couple of other changes have taken place too. Just before my birthday I made the decision to cut my hair short again. It was a hard choice but necessary- I have very thick hair & having it long meant it took alot of looking after. This wasn't always easy, especially when I'm not well & no matter how many times I brushed it it always seemed to turn into a mass of knots. So off it came. However I wasn't too upset as I went back to my old style- a cute & femenine Rhianna-style cut. I also went from bleached blonde to a lovely soft bluey-black so overall I'm happy. The second change is I've had another tattoo, but there will be more about that in a later post so for now my lips are sealed! Needless to say I am going to be tackling some of the issues surrounding tattoos so watch this space!

So, an overall very busy month. Like I said, I am hoping things will start to calm down & I am currently working on a few new posts full of exciting things, which I will post over the next few days. Until then, thanks for reading :) Xxx

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For questions, suggestions, opinions & comments, feel free to either comment below or email me at:
dollytrolley1994@gmail.com

Endometriosis: the next stage- scary times

Hello everyone!

In my last post I think I spoke a bit too soon when I said things were a bit better. On Tuesday 1st of July I had been feeling pretty rough all day. Part of the problem I am now having with my endometriosis is horrible sharp pain in my belly button that feels like I am being ripped open. I've also been having alot of chest pain which leaves me struggling to breathe & making my heart rate increase.

By about 10pm I couldn't stand the pain anymore, I was sweating & feeling pretty chilly & I couldn't breathe very well, so called NHS 111 (the out of hours GP service). Next thing I know the lady on the phone said an ambulance was on its way, mainly because she was very concerned that I was having chest pains. When the ambulance arrived they were pretty worried because my blood pressure was quite high & I had a fever. They took me to A&E & I was really scared at this point. I was hooked up to monitors & drips & I was just in so much pain.

After hours of waiting, blood tests, 2 chest xrays, several ECG's & monitoring, they told me that there was no infection lurking, & there were no obvious problems like clots, bleeding, heart issues or blockages. The doctor was concerned because (warning- TMI!) my bowels looked very full (odd because I wasn't constipated). They kept me in on the observation ward & gave me morphine overnight. In the morning the gynaecologist came to see me & said that they'd probably keep me in again.

She told me that one of the problems they were having was that because I was being treated at a different hospital for my endo, that there wasn't alot they could do. I explained to her what had happened when I had previously been to see the "Bowel specialist" & she told me that it sounded like he was trying to fob me off & that I needed to see the GP to get a second opinion.

The only thing the gynae team at my local hospital could really offer me was contraceptive treatment & pain releif as they didn't have any of my laparoscopy or diagnosis report. I had already discussed contraceptive & hormone treatment with my other half & it wasn't a viable option as I have hormone problems & last time I was on the pill it made things worse.

I asked her if she was able to give me some pain relief so I could go home, & although she was still concerned she agreed, telling me I must go to my GP that week to get a referral to a specialist endo centre, & that I must come back if things got worse.

I spent the rest of the week sleeping & in alot of pain. When I saw the GP on Friday she was really shocked about what the bowel specialist had said & that there was no way this could just be left. She also told me that as well as having endo on my bowels, uterus & rectum, it was also spreading to my bladder & that I had alot of scarring & endo in the Pouch of Douglas (the area between my rectum & vagina). She also said that the report showed alot of scarring & adhesions.

The GP has now referred me to a specialist endo centre in Southampton so I'm waiting for an appointment. I really hope that things start to move forward now, as this has been going on for a long time now. Other than that I am trying to keep positive & hopeful that they can help me.

Thanks for reading :)
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For questions, suggestions, opinions & comments,  email me at:
dollytrolley1994@gmail.com

Managing & relieving pain

Hello everyone!

Today I want to tell you about some of the ways that I deal with pain. If you read my blog then you will have heard me tell you that I have been ill for a long time, with various different problems. With pretty much all of these problems comes pain, & lots of it! It's horrible & there are lots of days that I'm unable to do much & it can even leave me bedridden. Not fun!

It's not all doom & gloom though, as over time I've also found some great ways to combat pain & side effects of illness. Whether it's headaches, stomach pain, back pain, joint pain, sickness & nausea or severe tiredness, there are ways I have found that can really help.

***As a little disclaimer I have to mention that this in no way is professional medical advice & that  you should always check with your doctor if the problem persists or you are unsure of what to do.

1. Painkillers- a pretty obvious one. I am on alot of strong painkillers for some of my problems, & they do help. However, with painkillers, you can also get side effects. These include: drowsiness, irritability, addiction, allergies & may lead to further problems. It sounds old but you must always read the label to check it's ok for you- even if it has been prescribed (I am allergic to anti-inflammitory medicines & have been prescribed them by accident before!) It's also not a good idea to take over-the-counter medicines for more than a few days at a time- if a problem persists for more than 3 days then it's a good idea to see the doctor to rule out other problems.

2. Heat- this is a great one as it works on a variety of pain types. A hot bath can help soothe aching joints & a poorly tummy, as does a hot water bottle or cherry stone/wheat bag applied to the painful area (don't put a hot water bottle directly on your skin- wrap it in a towel first). It can also help in winter when you've got an icky cold or virus. Again, it sounds old but wrapping up warm really helps- instead of one big thick item of clothing, try layering lighter items- that way you can add or remove them for comfort!

3. Tiger Balm- a recent discovery for me & it has worked so well that I've ordered it in bulk from Amazon. You get two kinds- red or white, & it is available in a rub/balm or patch form that you apply to the affected area. I use the red Tiger Balm rub- simply rub a small amount into the painful area(s) & after 5-10 minutes you'll get a deep, cooling sensation which takes the pain away. I use it for everything- back & joint pain, muscular pain, neck pain, headaches & even stomach pain. Just keep it away from irritated or broken skin, eyes, nose & mouth.

4. Headache relief sticks & patches. These give a lovely cooling sensation to your forehead & help get rid of your headache- but don't get it near your eyes or put on broken or sensitive skin.

5. Massage & rubbing the area. They say your hands are your best tool & it's true. It might hurt at first but massaging painful areas really does help.

6. Light support or compression- this is great for painful joints. My arm is constantly immobilised due to a break not being treated 2 years ago. This left me with permanent damage & now my only option is surgery to fix it (more surgery- not fun). Sometimes immobilising the painful joint for a few hours or supporting it with a light compression bandage such as tubigrip or cohesive bandage can help the pain. However, you mustn't have the bandage too tight- if it cuts off the circulation or limbs look blue then take it off. Also, if the problem persists for more than 3 days then see a doctor- you can break bones without knowing!

So there we go- some pain relief tips! Hope you enjoyed reading & would love to know if any of these worked for you :)
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For questions, suggestions, opinions and comments, email me at:
dollytrolley1994@gmail.com or post a comment below

Endometriosis- the next stage

Hi everyone,

Little update for you all today- got a phone call yesterday from the hospital saying that they've received an urgent referral through to the bowel surgeon- Mr Tyrone Carpenter, & he wants me to see him next Wednesday. This is a scary time for me. At my last weeks appointment with the gyneaocologist, she told me alot of things & phrases such as "bowel resection" "will likely need a stoma" "catheter" & "Long hospital stay" were used.

It also didn't help that she told me part of the reason they couldn't remove more of my endo last time is because my oxygen levels majorly dropped & there was a huge risk of me bleeding to death.

How I am feeling in general...
Still in a huge amount of pain most of the time. Nights are the worst. I get big headaches most days & my joints & back are often sore. I'm so tired most of the time too. My appetite is almost non-existent (although fresh fruit, small snacks & ice pops usually go down ok). Going to the loo isn't nice as it hurts! My bowels constantly feel gassy & full. I also struggle to breathe occasionally.

On the days when I feel up to it my other half takes me out for a bit- he's been incredible. Yes he spoils me (bought me a tablet this week- I burst into tears when I saw it) & buys me little treats to cheer me up. But he's also been my rock- rubbing Tiger Balm into my sore back & joints, sitting up on 'the night shift' when I'm having a bad time or can't sleep, & doing everything he possibly can to make my life easier. I love him ♡♥♡♥

Overall, although I feel physically CRAP I'm trying to stay positive. I joined a forum for Endometriosis sufferers last night & already have spoken to some lovely people. The forum is called Endometriosis UK & some of the stories & advice have been really helpful :)

Thanks for reading :)
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For questions, suggestions, opinions & comments, email me at:
dollytrolley1994@gmail.com or comment below :)

Endometriosis update

Hi everyone!

If you've been following my blog on my endometriosis surgery, I now have an update. News isn't good I'm afraid- more surgery is on the cards & this time it's going to be alot riskier, but necessary. I went to see the consultant today who explained to me that my endometriosis is pretty extensive- all over my uterus, ovaries, bowels & abdominal cavity.

She explained to me that last time they could only remove a small amount because they didn't have the right equipment & that if they would have tried there was a huge chance I would have bled to death. Scary.

I was told that with endometriosis, it is more common to grow in a few big clumps, which are easier to remove. Because mine is growing in many flatter patches they will need to do more skilled, riskier surgery. Like all surgery there are risks- bleeding, damage to surrounding organs, reactions to the anaesthetic ect. The risks with this operation are also pretty serious- I could lose my womb & ovaries, my bowel could get seriously damaged & there is no guarantee it will stop the endometriosis coming back (but they have to do it because otherwise it will get worse.

They are unsure whether the endometriosis has penetrated INTO my bowel (they were unable to tell during the laparoscopy because they would have needed specialist equipment) but if that is the case I will also need something called a bowel resection (where they cut away the diseased section of the bowel. Again this causes complications as it will mean that they would need to fit a colostomy/stoma bag (where the waste is diverted into a bag from your stomach) as the bowel would need to rest for 3-6 months. Not nice!

I am waiting for an appointment with the bowel specialist which will hopefully be soon. He will be talking me through the procedure & giving me more details so I will keep you posted!
In the meantime I am keeping as cheerful & busy as I can & enjoying the little things :) thanks for reading!
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For questions, suggeations, opinions & comments, email me at:
dollytrolley1994@gmail.com or post a comment below

Endometriosis surgery update 3

Hi everyone,

Bad news I'm afraid- I'm back in hospital (again). Last night I had a bit of a temperature & was in bad pain. Today I woke up in alot more pain with a very high temperature & was rushed to hospital because I was vomiting alot too. The doctors are particularly concerned about the pain & the fact my heart rate is very high so I'm due for more tests in the morning.

In the meantime I'm on IV fluids, anti sickness & painkillers & under observation for tonight.
Fingers crossed this is just an infection & nothing serious! I will update as soon as I can. Thanks for reading
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For questions, suggestions, opinions & comments, email me at:
dollytrolley1994@gmail.com

Endometriosis surgery update 2

Hello Everyone!

A couple of days ago I posted saying that I was in hospital. I am happy to say now that I am home again. After alot of tests it was found that I had a collection of fluid around my right ovary, although they were unable to tell if it was blood or anything else.They did question alot of things such as urinary & kidney infections & other things so I was on an antibiotic drip as a precaution.

They weren't too happy about letting me go home but I felt that there was nothing they could do there that I couldn't do at home. I was discharged with lots of morphine & other painkillers, with strict orders to come back if there was no improvement or things got worse.

Although I am in serious pain I'm happier at home- my fiance is looking after me & I'm in my own bed which is more comfy! This weekend was the worst time for me to be in hospital as it was mine & my fiance's 2 year anniversary & he'd planned a surprise meal (I cried my eyes out when he left after visiting me that evening!) But he has planned a surprise for when I am better so I have that to look forward to!

Hopefuly over the next few days things will start to improve & I will post an update soon!

Thanks for reading :)
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For questions, suggestions, opinions & comments, email me at:
dollytrolley1994@gmail.com

Endometriosis surgery update

Hello everyone,

Very quick update on my progress after the surgery- I'm back in hospital :( I've been having bad tummy pain since last night that keeps getting worse & after seeing the out-of-hours GP this afternoon I was admitted to hospital with concerns of another infection.

I've had blood tests & swabs with talks of scans in the morning. In the meantime I am being kept in for monitoring & they are starting me on an antibiotic drip tonight. Hopefully they will find the cause of the problem by tomorrow & not have to be kept in too long.

I'll update tomorrow to let you know what is happening . Thanks for reading :)

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For questions, suggestions, opinions & comments, email me at:
dollytrolley1994@gmail.com

Laparoscopy for endometriosis

Hi!

Todays post is going to be advice for people who are underogoing surgery for endometriosis. A couple of days ago I had to have an operation called a laparoscopy to remove endometriosis tissue on my womb, and I hope this article helps anyone who might be having the same thing.

For a few years since my mid teens I have suffered from endometriosis, and also PCOS (Polycystic ovary syndrome). Endometriosis is a long-term condition where the tissue that usually lines your womb every month before your period grows outside of your womb. Commonly, endometriosis grows on the womb, ovaries and fallopian tubes although it can also grow anywhere in the abdomen. It can cause alot of problems such as painful, heavy and irregular periods, severe pain and fertility problems. Unlike the lining in the womb that sheds during a period, the endometriosis has nowhere to go so it builds up and can become serious if not treated.

The only way for endometriosis to be officially diagnosed is with a laparoscopy, as unfortunately a scan may not always pick it up. A laparoscopic investigation is performed under a general anaesthetic. The surgeon makes a small cut in your belly button then fills your abdominal cavity with co2 gas to separate your organs so they can get a better veiw. Then they insert a small camera called a laparoscope to look for the cause of the problem. If you do have endometriosis, then as long as there isn't a huge amount or it isn't too risky to remove then often the doctor will remove it there and then by using a small device to burn it off.

Now for my personal experience-

After being admitted to the day surgery ward at 7am I was shown to a cubicle by a lovely nurse who helped me change into a gown and handed me a very stylish pair or disposable surgical knickers (horrid things that look a bit like white fishnet boxers lol). I was then shown to the surgical waiting lounge where there were other ladies waiting. After being called into the office many times (I have a complicated medical history so they had to be extra thorough with the questions) I had my obs done, urine test, paracetamol and was given some surgical stockings (they had to have a good look in the supply closet as I needed extra small ones). Then after a good natter with the aneasthatist and the theatre nurses as they did their final checks, we walked down to the operating theatres.

In the preparation room I laid down and two nurses chatted to me whilst a cannula was put in my hand. I was hooked up to a heart monitor and oxygen then given anti sickness and something to steady my heart rate (high blood pressure is not fun). Then I was given the anaesthetic and drifted off.

Waking up was horrid. I was so cold and shivering and the pain was pretty bad. The recovery nurse told me that they were going to put an elecric blanket on me to warm me up.  She then gave me a nice dose of morphine. I had to keep the oxygen on for a couple of hours after as my blood oxygen levels were too low. They did my obs every 10 minutes and kept having to check that I wasn't bleeding 'down there'. The recovery nurse told me that I had gone into surgery at half 8 and didn't get out until half 10 (they told me I would only need to be in for 45 minutes). Apparently there were some complications- the doctor had to make 3 incisions and could only remove a tiny bit of endometriosis from my uterus for biopsy- I had alot on my bowels & in my abdominal cavity that was too dangerous to remove and would need specialist surgery for.

After coughing up alot of blood I was told the tube had caught the inside of my throat so it would be sore for a few days. At around 12 I was taken back to the ward, still on the oxygen. I had a nap then the nurse bought me some more morphine and a cup of tea and biscuits. When the doctor came to see me she explained that if they had of tried to remove the endometriosis on my bowels I could have bled to death and would need a major op called a laparotomy to remove it and this would be discussed at the follow up.

A couple of hours later I was discharged with painkillers. When I got home my fiancee helped me to bed as I was so tired and sore. I slept for the rest of the day, waking up to have drinks and go to the loo. I had alot of shoulder pain from the gas and it was agony to move. That night I slept but woke up in alot of pain.

Yesterday I woke up very sore and cranky. I slept most of the day and my throat was sore. By evening I had become worried as I was having some bad smelling yellow discharge and my wounds were a bit weepy. After speaking to the GP he ordered me an emergency prescription of antibiotics and told me if it got worse to dial 999. Luckily by this morning things hadn't got worse. Today I was still very sore and tired, and it still hurts very much to move but hopefully tomorrow things may start to improve.

I'll post some updates in a few days time. In the meantime I hope this helped for anyone who might be having a laparoscopy in terms of what to expect, and if you have any questions then let me know. Thanks for reading! X
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For questions, comments, suggestions or opinions email me at:
dollytrolley1994@gmail.com