Could i have endo?!

[silarose28]

Hi everyone

Was just after a bit of advice.

I have had loads of blood tests and an HSG. All normal - except my luteal phase is only 6 days.

Last time I went to see my fs he mentioned casually that some women with endo have short luteal phases. He didn't say any more. This has got me worried.

I have very heavy periods that last for 9-10 days. They are not really painful - though i feel heavy and a bit crampy for a day or so. i also have a lot of bowel complaints that i have always thought were ibs.

My fs doesn't seem worried about endo - but would he know if I had it? I have heard that the olny way to find out is a lap and dye. Is that true?

I am going back next week so any advice would be really welcomed!!

xxxxxxxxxxxxxxxxxxxx

 

[MillieMoo]

Sorry to read and run but i can't offer any advice. I hope someone can help you!

 

[silarose28]

Thanks hun

Am probably doing my own head in over nothing! x

 

[Rach27]

You could have endo. In fact, anyone with unexplained infertility could. Women with endo can experience a range of symptoms or none at all! I hadn't heard of the short Luteal Phase as a symptom but endo is certainly often mistaken for IBS.

I had endo (painful periods and difficulty conceiving).

It took me 4 years of TTC to get my diagnosis, which has to be via laparoscopy but 7 months after treatment, I got pregnant naturally

I would suggest maybe taking something to lengthen your LP and then investigate endometriosis if that doesn't work after a few cycles.

Good luck x

 

[Dilek]

Hi

I do agree that symptoms do vary between one case to another. Only a lap will diagnose if you have endo. However if you have cysts this can be diagnosed via a scan. I have never heard of a short LP to be a symptom of endo. But again everyone varies, I have light periods, min period pain, but i do have bowel problems IBS and lactose intolerance. Your heavy period and ibs does sound like endo. I think you should look into fibriods as well. If you have any more questions ask away, it seems like i endlessly search on the net regarding endo.

 

[silarose28]

Hi ladies

Thanks for your replies.

I haven't got any cysts -is that a good sign that I don't have endo?

The more I think about it the more I need to ask my fs about endo. But he is difficult to ask at times because he gets very impatient with me!! I suppose I just have to bite the bullet and go ahead and ask anyway! I haven't mentioned my ibs to him before - I will do next week. OMG I feel like he dreads me coming and I always walk away feeling like a silly little girl!!!! It's horrible!

 

[Dilek]

Hi ladies

Thanks for your replies.

I haven't got any cysts -is that a good sign that I don't have endo?

The more I think about it the more I need to ask my fs about endo. But he is difficult to ask at times because he gets very impatient with me!! I suppose I just have to bite the bullet and go ahead and ask anyway! I haven't mentioned my ibs to him before - I will do next week. OMG I feel like he dreads me coming and I always walk away feeling like a silly little girl!!!! It's horrible!

Sorry hun but you can have endo without having cysts, its better that you dont. You have to pester and ask away and insist to have them take you seriously. It takes about 4-5 years on average for a women to be diagnosed with endo, as drs dont take it seriously unfortunately. Its there job to listen and help us. I would go prepared with your questions, i like to write it down and take it with me. You watch then, how quickly the mood changes and they start listening.

Goodluck

 

[silarose28]

Hi Dilek

Thanks so much for your help. About 2 years ago I had an operation for recurrent cystitis which didn't really work very well. Have been reading tonight and it seem that recurrent cystitis can have the same symptoms as endo and the 2 can be mistaken for each other. Am feeling really worried now!

I have been really pushy with my fs. He would have discharged me to the fertility nurse a while back as he felt I was fine - but I made him do follicular tracking and proved to him that I was having problems with my luteal phase even though he didn't believe me to start!!! I will go back and be pushy again but honestly my energy is just running out!!! This whole thing is just heartbreaking and I am feeling so low!

Thanks for all of your help - I don't know what i would do without the support of the girls on here!!! xxxxxxxxxx

 

[Dilek]

No probs hun, I wanted to share something with you and might even do is a new thread.

I totally believe in being pushy. After my 1st IVF ended in mc, I needed to go back on hormone therapy to stop my periods. There are 2 drugs for this and they wanted me to be on a different one when the other worked just fine.

Now I argued with them for an over and refused the drug. One dr told me there is no difference and compared the drugs to sainsburys milk to tesco milk. Ahh i could kill her for that. Anyways I ended being on the same drug as last time. I left happy

The next month i noticed i was having ovary pain, the drug should have settled my ovaries and i should have no pain. I went back to the clinic to get my next dosage and i complained about the pain. They didnt want to hear about it and i sat there and argued again. I demanded for a scan. They wouldnt scan me even though i was in a scanning room with Drs that do scans. Anyways After more tears and almost abusing the Dr, they agreed to scan me the following week.

OK So I had the scan done outside of the clinic and I have a huge dermoid cyst. Which totally contradicts the clinic who said it was an endo cyst. This is a big problem as these cyts will not go away with my monthly hormone injections. I had my consultation with my fertility specialists and he requested an urgent MRI Scan.

MRI Scan shows I have not 1 but 2 dermoid cysts and I need to have surgery ASAP.

Moral of the story, if i had shut up and listened to the clinic I would be having my monthly hormone injections and assuming everything is fine. And we would all get a damn shock on the down regulation scan in late nov when they would have found the cysts.

This Dr i have argued with me kept saying I am a Dr, I know your problem and everything is OK... I responded YOUR NOT GOD!!!!! How do you KNOW?????

Get things checked up and dont stop until you believe it!

 

[reallyready]

Silarose
I was telling my OBGYN for a year and some odd months that I thought I had endo and she dismissed it immediately each time. Painful intercourse. check. Painful Periods. check. horrible PMS. check. Mood swings. check. What is to dismiss in any of that!?

Finally, after Rach27 on BNB encouraged me, I called an endo specialist and just phoned back to my OBGYN and asked her to refer me for a second opinion appt with the endo specialist. Had a full body scan and she does believe I have some endo. I still won't know for sure until the lap in November but at least I will have the final answer then.

I don't know how it works in the system where you are, but looking back, I wasted 2 years with someone who wouldn't listen to me and even if I know she was well intentioned, she dismissed me in many ways, when I cried one day she actually handed me a tissue and said, "Oh, stoooop crying, why are you crying?" Looking back, I can't believe I stayed with her after that. I found myself asking her if she had children or had ever had trouble having children, practically begging her to be empathetic. It was awful!

NO ONE should make you feel like a silly girl or make you feel intimidated to tell him/her about any symptom you are experiencing with your body.
YOU know your body better than the doctors.

The endo specialist recommended https://www.endometriosisassn.org/
as she said there are a lot of misleading sites about endo online.

Good luck and many hugs!

 

[harmonygirl72]

I am in the same boat as you! I have unexplained infertility and IBS. I am so paranoid that I have endo! I also have a fairly short luteal phase. I have an appt with my fertility doc today, and I made a list of questions to ask him. I will definitely ask him about that!

 

[kairzh7]

Unless they can give you a reasonable explanation as to why they don't think it is then you definitly push and be your own advocate. Don't waste a lot of time because they can't be bothered to look into it. I have endo which was diagnosed when I was 24. It was a very small amount, but on the pain receptors on the wrong side of my uterus, so a little bit can cause a lot of pain. Anyways I was starting to have symptoms reminiscent of the old pain and my doc had moved away so I saw the person who she sold her charts to. She told me that she would prescribe birth control to deal with the symptoms. I told her we were trying to get pregnant so that wouldn't work. Her response was that I was just going to have to live with it then. She gave me a chart for my temps with absolutely no instructions and a sperm analysis for DH. I went to my reg doc shortly after and got him to refer me to a fertility specialist and do DH sperm analysis. My new doc had done the lap and testing (all of which were clear) and started me on Clomid before I would have even had a second appt with the "mean" doc. Anyways, my point is you will get the level of care that you insist on and if your doc is really not listening then you may need to look for someone else if that is an option, otherwise be pushy. You are paying for their services. Make sure you get what you pay for.

 

[harmonygirl72]

Does Clomid help with endo?

 

[silarose28]

Thanks for your responses ladies

Dilek - I'm so sorry you had to go through all of that!!!! You've made me feel more determined for my appointment on Thur. I can't believe how much infertilty they write off as unexplained - not properly investigated more like!!! Thank God you insisted like you did!


Reallyready - thanks for the info - I will look on that site tonight. Have you managed to change your fs? Can I do that? I really hope that you get some answers and the best treatment in Nov.

Thansk again ladies xxxxx

 

[silarose28]

Thanks harmonygirl and Kairzh - I am definately feeling more geared up for Thur now! You are right - you get what you demand in this life! harmonygirl - let me know how you get on and what the doc says!

 

[silarose28]

Hi everyone

Am really proud of myself. Was very assertive at the fs appointment today. Fs agreed I could possibly have endo as there is a link to luteal phase defect, heavy periods, cystitis and ibs. He has referred me for a laparoscopy (can't spell it!). He even thanked me for my input at the end! Wow!

So we shall see!!!! Thanks for all of your support - I honestly don't think I would have had the strngth to be so assertive without you all xxxxx