Endometriosis Diary

[Fliss]

So I can't find a more appropriate place for this. I need somewhere to put my thoughts as I'm struggling a little.

Since I was 15 (am 31 next month) my periods have been utterly agonising. Not necessarily heavy (though the last few years that have been) but we are talking "curled up in a ball sobbing, vomiting through the pain" and I've done everything in my power to stop them.

Labour hurt less.

After I had N I wanted not to go back on hormonal contraception as my sex drive was through the roof and I was thrilled with that. But they came back with a vengeance when he was 2 months old. By the time he was 6 months I couldn't pick him up and if he kicked me I screamed.

So I went to the doctors who did the usual flappy handed "oh that's normal, hmmm you want a mirena? Oh ok then"

That has store both the bleeding and the pain before we had N. This time it didn't work.

They "topped it up" with the mini pill as that had worked before when it was wearing out. Only it didn't. I was spotting/bleeding every other week and in constant low level pain.

So I went back and they stuck me on the depo. Improvement in bleeding but the pain was still the same, my sex drive was down the toilet, and my skin was like a teenagers again and NOT in a good way.

So they agreed to refer me to a gynaecologist. Who examined me in December. Now she felt I had issues but that the symptoms were atypical of classic endometriosis - warned me that surgery might well not find anything. That I might not have an answer and then the only option available to me was high dose progesterone until TTC again.


And tbh that was the message I came away with - you probably won't have endo but we'll book you in for a laparoscopy and diathermy "if you need the diathermy - we usually only do that for a certain level so you might not need it"

So my surgery was Monday. They got in there with the camera and couldn't get past my bowel.

So they basically went "WAT? Holy hell we can't deal with this" came out WITHOUT doing any diathermy and I have been referred for an MRI next month.

I'm classed as moderate to severe and the MRI determines the next stage of treatment.

A good in theory. Except when I was back up on the ward they asked about children. I explained I had a 21 month old and that I'd conceived him within 6 months.

"Oh well that was lucky. We'd advise you to start trying again sooner rather than later" (it was on my notes that I wanted another baby)

That freaked me the hell out. Apparently I am lucky. So my mil is talking about "how we deal with your secondary infertility" my husband's reminding me we cannot afford 2 kids in nursery, I'm freaking out because I want another baby, my mother is trying to help as best she can, my sisters furious on my behalf that it's taken 15 years for a diagnosis and my father? Who is a DOCTOR is eating humble pie as throughout this whole process has declared that it "was all in her head, she has a low pain threshold, she's making something out of nothing" is now worried about me. And I'm just ****ed at him for never believing me.

So I'm just not in a good place mentally. I have a partial diagnosis but it's not finished yet, I have no idea what it means as they didn't talk to me about it beyond "we need to refer you". It's 5 weeks til my MRI then god knows.

I didn't expect this.

 

[brittany2070]

Fliss, that is horrible that they didn't come up with the diagnosis for so long. It sounds like you've had a hard road to come up with it and still waiting for answers.

I understand completely why you are freaking out when they say you should try to have any other children sooner rather than later. I also have recently been diagnosed with endometriosis. I bet you are grateful for your little boy. My endo has prevented me from having any children and after my laparoscopy and how much endo they found. I was told that I needed to be pregnant within the next year or that I will probably never have children. It is scary when doctors give you a time limit.

I was lucky when it came to my symptoms, that I didn't have very many symptoms but that also means if I don't have symptoms the doctors won't know when my endo comes back. I'm only 25 but I feel like I need to have kids as soon as possible or my window of opportunity will close.

Have you looked into taking any hormones or herbs to help with the endo? I've done a lot of research about endometriosis and started taking some vitamins that could possibly help.

Brittany

 

[Fliss]

I've done some basic research, but I'm trying to stay away from Dr. Google until I've had the MRI results.

I took Agnus Castus and Vitamin B6 when trying for Nathan as well as the folic acid - don't kinow if it helped, but I conceived whilst taking it all so maybe?

I did find out that women in the moderate - severe category are a third more likely to go into premature labour... so that may have been a factor in Nathan's somewhat unexpected arrival, but he was a very good weight.

Bless you - it's horrible when they say that. In my case it was such an off-the-cuff comment given we don't have the full diagnosis, but I guess they were going on the fact that it's on my bowel which in theory automatically puts me in the 'severe' category...

Just not sure what the hell this means for us.

I was broody anyway and right now I'm so upset and hurting - which is ridiculous considering I just don't know enough... which is the frustrating part...

 

[brittany2070]

I like to think that because we've had these trials and tribulations that we are stronger in the long run. We have to be strong for us and our loved ones. I don't blame you for being frustrated. It sucks that you have to wait so long for the MRI and for answers. I don't know what it all entails but I hope that they can figure it out. I work at a hospital and I see people everyday that the doctors can't figure out whats wrong and they are there everyday getting tests done and these are the strongest people.

We all can use encouragement and support.

Have you gotten second opinions from other doctors?

 

[Fliss]

Back to work today since I'm in no more pain than normal and I don't have a sick note.



Bad night, serious constipation and bleeding.



No change there then sigh.

 

[Fliss]

Welp my smear test was normal. One less thing to worry about at least.

My boss (male) was fricking AWESOME about my diagnosis - will keep everything confidential and asked sensible questions and was sympathetic. He's going to be a SAHD from next year I'm certain and I'm GUTTED.

 

[brittany2070]

Thats great. How is your hubby doing with all of this? being wonderful and supportive I hope.

It's so nice to have a boss that is understanding with all the things going on. My boss is also wonderful when it comes to all this.

It's been a rough day today. I don't know why today I just feel overwhelmed and sick and tired of seeing other people that don't want to be pregnant come through my work. Some days I just feel like crying.

 

[babyvaughan]

Is the pain only with your periods?
they have mentioned endo to me
for about 2 years, 3 doctors believe
I have it but wont before Lap out of
fear of more scarring since I have a lot from past surgery's.

My periods are so beyond painful, I shake, can't find a comforting position, cry, puke, can't stop going to the bathroom. The only thing that stops it is IV painkiller's
even like Vicodin doesn't help it's AWFUL. I don't bleed heavy, I had HSG and no scaring on the inside of uterus and tube's are open yet I haven't conceived after 3 years of trying!

 

[Fliss]

The pain is worst during my period - it starts the day or two before my period and continues until I actively stop bleeding.

But it happens off and on throughout the month - also really hurts whenever I need to poo. Which, considering they saw some on my bowel, probably makes sense. I was diagnosed with IBS as a student - though with no tests, just ticking the boxes on the back of a leaflet.

My DH is being wonderful. He's just cuddling me so much - he knows how much that off-the-cuff comment from the doctor has thrown me, how much his mother's baby-broodiness is hurting me.

He's also emininently practical. He's stated: we will have another child. We may not birth one, but we will try and adopt if TTC doesn't work. I know we've only got 4 years to do that in though...

 

[Fliss]

So today has been a low-level pain day overall. Which was great - until some utter TOSSER on the train jammed their elbow straight into my stomach instead of heeding my "excuse me" as I tried to get past to get off.

Now I'm sore, tired, excessively grumpy and sad all at once.

I had a look at adoption related stuff today and it just made me so so sad.

 

[babyvaughan]

wow that's crazy, I have IBD and when I have to poo it hurts every time, I had my colon removed so its not from the diease anymore so I'm wondering if its the endo on my pouch.. that would make a lot of since!

My hubby is great as well he just holds me and same his mother always tells me "You need to give me a grandbaby" She know's my struggles with TTC so it's not helpful her saying that!

We also agreed that we will either do Adoption or Surgency if we can't conceive

 

[Fliss]

I wouldn't mind surrogacy but I have no idea how to go about that and the legal ramifications scare me

 

[Fliss]

I'm really depressed and hurting (Mentally) today. I should have had my MRI but it's not for another 4 weeks.

I don't know what the hell the future holds. I don't feel like I have anyone to talk to.

My job sucks and my (fabulous) boss is likely to leave within the year (and be on extended paternity for the latter half of that)

I just feel hideous.

 

[Fliss]

Holy god. Got my diagnosis letter through

Frozen pelvis with bilateral tubo ovarian endometriosis also bowel adhesions

I ONLY knew about the bowel stuff.

I'm screwed aren't I????

 

[babyvaughan]

I'm going to look into it for you!

I had a rough last 2 days, AF started which mean't the horrifying pain I had to take strong painkillers to get through the first night, it really made me sad!!

I went for a drink lastnight to relax!

I have pelvic floor damage my muscles are stuck and wont move, I've been getting the massages to loosen them, I also have the worst type of adhesion's all across my upper body its awful, they removed it for hours on my second planned surgery but they grew back and now they refuse to try again.

It suck's! I think it's whats causing me not to concieve but I'm not giving up, and you can't either! Look into TTC diets, and Endo diets. Also massage's!

I get down too but we just can't give up!

 

[Fliss]

Thanks xxx

So after a night off of 'not thinking about this anymore dammit' yesterday we did some research into my new consultant this morning.

He's an endometriosis specialist, with an on-going study into finding non invasive diagnosis testing and a special interest in preserving fertility.

I guess I'm pretty much in the best hands I could be?

 

[Fliss]

I'm really dreading the spate of "I'm expecting" announcements on Facebook tomorrow

 

[May112]

Thanks so much for sharing, ladies. It's all really sooooo hard to deal with. My dr also thinks I have endometriosis. I'm really worried and concerned bc I've already had one ovary removed due to ovarian cysts. I don't know what to do. He even said that IVF may not be effective for me. Getting a sonohystogram next week and then may have to go for a laparoscopy or full blown surgery.

 

[May112]

Also, what herbs or natural medications did you take to help the endo? I went to a naturalist and he said he could do nothing for me. that was pretty depressing considering he is well known for using Chinese medicine to help such cases.

 

[Fliss]

If your diganosis procedure is anything like mine, they'll do the laparoscopy first. If it's mild to moderate endo they will *probably* do diathermy at the time to remove some adhesions if they can.

If it's moderate - severe (that's me and tbh I expect to be severe) then they'll need to do more tests and more invasive surgery which will probably be another procedure - depending on the hospital - I'm being referred to a specialist at the John Radcliffe in Oxford rather than my little local hospital in Banbury because they can't deal with severe cases sadly.