New to the site, story so far...

[Naomi1984]

Hi everyone

Im new here but Im finding it so useful so far, thanks for sharing all your stories etc.

I was wondering if anyone might be able to offer me any advice or info based on my story so far, here is the timeline so far:

* Started seeking out medical care in May 2013 after having at least 2 years of brown spotting before my periods (exactly 5 days before my period every single month)

* GP sent me to the hospital for a transvaginal ultrasound which showed everything was normal.

* In August 2013 started getting pelvic pain and back pain from about 2 days before ovulation until about the 2nd day into my period (regularly taking ibuprofen). Fatique, mood swings, irritable bowel.

* Went back to the doctors and was sent for day 21 progesterone test (which came back as borderline 30NMOL) and Thyroid test which was completely normal.

* Went back to the doctors and requested a referral to gynae which was done.

* Met with gynae who was annoying, didn't listen to me, ignored the fact that I told him I wanted children, didn't examine me at all. Told me I definitely didn't have endometriosis. suggested it was pms, prescribed me with antidepressants and told me he would see me in 6 months. I was not at all impressed with his consultation, the fact the didn't examine me to understand the location of my pain.

* Immediately booked a consultation with a private consultation with a gynaecologist who listened very carefully to all of my symptoms, told me a diagnosis of pms was ridiculous and not to take the antidepressants, looked at my bbt charts (ive been charting for 8 months), did another transvaginal ultrasound and said she suspected that I had endometriosis. The ultrasound was inconclusive as it was 4 days before my period was due and the lining of my uterus was abnormally thick - 18mm.

* Went back to private gynae to have ultrasound again, mainly to see if thick lining had shed and to get a better look. Apparently lining had shed, my ovaries are not polycystic, uterus is normal size, no endo visible, definitely ovulating. My cervix is also fine when she looked.

Basically as we are now desperate for a baby the private gynae has suggested that we spend 6 months trying very seriously to conceive before pushing for a lap and a dye test through nhs.

I know now from my nhs appointment that gynaes aren't always the best source of information and how useful people who are going through this can be. I was wondering if anyone could offer me any advise on the following things.

Do I have a right to demand an appointment with a different gynae?

Do I have a right to demand a laparoscopy?

Im aware that some of my pain doesn't fit within the traditional endo symptoms, I am now a few days before ovulation and the pain is back from experience I know the back pain and sore pelvic pain will last until day one of my period when it will change to a burning pain, then day 3 of my period it will disappear, then I will get around a week or so of no pain before it will start again just before ovulation. Any experience of this?

My pain is located across my lower pelvis and lower back but I have this very specific pain that I can pinpoint which is about 2 inches above my vaginal opening on the right side and this patch is about 2 inches big but there are no lumps or anything. Its so weird but I feel it every month and its really painful. I have felt it a couple of times on the left side but not often. Its so low that its probably below the pelvic cavity so would this be consistent with endo?

So many questions and so frustrating not to have any answer. Its so frightening to want a baby, be in constant pain and have all this uncertainty hanging over you.

Advice/support and experiences would be really appreciated.

All the best to all of you.

Naomi xx

[Tina2609]

Hi Naomi

I am sorry to hear of the time you are having.

You have the right to speak to another Gynae, Before I got diagnosed I had a terrible time trying to get Doctors and Gynae's to believe me. The last straw for me was when a Gynae ( woman) told me it was just the way I am going to be after having my children.

I had been in pain for 18 months and I came out of that hospital in floods of tears, As soon as I got home I started to google my symptoms and that's it when I stumbled upon Endometriosis. The following day I found out the name of a Gynae at the same hospital that had experience with Endo. I phoned his secretary and told her my story. He agreed to see me and I had a Lap within 6 weeks. You need to fight! Don't let anyone make you think that this pain is not real, you need to be firm. No one should have to live in pain.

I really hope you get the answers you are looking for. If you ever need someone to chat to feel free xxx

[jmrjmr]

Hi naomi

My situation was kina similar to urs in some instances.

My lining was also thick 17mm. It was a polyp. I had it removed at the same time of lap. My lining would always thick but they never really saw tharound polyp on the ultrasound becuz it was small 1cm, and the pressure inside uterus pressed on it so it was not possible to see on ultrasound they saw it on sonogram thats where they inject saline liquid into uterus an used ultrasound to see shape of uterus.

I also have sharp knife edge pains on sides and burning nerve like pain in lower pelvic and sides. I have nerve pains on the lips of my vagina also. After the lap the doc said he found stage 3-4 endo.

Also pain around ovulation could signal endo since the pain increases becuz of increased estrogen.

I was offered zoladex treatment after surgery which was almost 2months ago. My hope is to get pregnant. I did not take the zoladex yet becuz of all the terrible side effects I heard, I am looking at natural remidies like nattokinase and serrapeptase.....still undecided.

[Naomi1984]

Thank you for your responses, so useful! I have seen on the hospital website that all the secretaries email addresses are available, maybe I'll try another consultant and see if I get anywhere.

Jmrjmr - sounds like we are in a similar situation. How bad is your pain? Are you ovulating normally? Did anything else come up on your ultrasound for them to think you might have severe endo?

Naomi x

[Naomi1984]

Also, did they give you any advice on your fertility? Are your tubes open etc?

[jmrjmr]

Hi Naomi1984,

On my ultrasounds from about 2 years ago, they always saw endometriomas or endo cysts on my ovaries, i had on both ovaries, but right beforet the lap surgery i had none on the right and 4cm one on the left. During the lap they drained the cyst. I didnt want to do a cystectomy because i heard that it interferes with your fertility (lower your amh).

The tubes were opened which was shown before the surgery (lap), this was shown on sonography. However when they performed the lap they also put dye through the tubes. The doc said that the dye came through but the tubes looked sick/inflammed therefore they may not work.

The fertility advice that i was given was to take 6 months of zoladex then try, but its going in three months after the lap and i hadnt taken the zoladex, im just trying the herbs/enzymes for now.

I felt normal for the first time in my life last month, i had extereme energy and did everything, but after my last recent period presently im starting to feel how i used to from before the surgery. It could be because of the stopping some of the supplements for a week but im starting back and hoping the pain decreases again. One of my supplement is also finished I'm waiting for the other bottle.

my pain was some days ok some days bad, but on average i could have handled it.

last year i took some hormone test and i was ovulating (progesterone was 15ng/ml however, before the surgery i took a day 12 test which showed estrogen levels at 106, which was kinda low, so i taught that i was having weak ovulation.

After the surgery, i took day 3 test and day 21 and it was a perfect ovulation, (this was last month when everything was great), i dont know what will happen this month.

(excuse the bad english)