Not yet diagnosed, awaiting laparoscopy. Extremely worried and frustrated.

[Snee]

Hi everyone, I'm new here and have not yet been diagnosed with endometriosis but am currently awaiting an appointment with my gynaecologist to discuss a laparoscopy. I am very anxious about joining but feeling like I have no where else to turn.

(My story so far is quite long so please bare with me 🙈)

I am 25 years old and have had ongoing gynaecology problems for around 3 years.

It first started at the beginning of 2014 when I went to my GP with intermenstrual bleeding and pain and bleeding after sex. I was sent for urgent scans and a smear and colposcopy due to my cervix looking inflammed. My smear test and scans all came back negative, and the biopsies taken at colposcopy came back as inflammation, I was told it was cervicitis and had to repeat colposcopy every 6 months and my symptoms continued. Two years passed having smear and biopsy after biopsy with my last colposcopy in January 2016 and my tests were still coming back with the same (chronic inflammation).

Then in March of this year I began to get a weird shooting pain in my bum (this is literally the only way I can describe it) it was so odd and sharp that I immediately became worried and when to A&E and all they done was examine me and do a urine test, this came back with trace of blood, white blood cells and protein so was diagnosed with a UTI even though i had no symptoms of one and given antibiotics. The pain was no better and my urine sample was sent away and came back no infection! It was then that I went to urgent care at a private hospital.

Given my history the first thing the gynaecologist done was check my cervix and was shocked by how large the cervical ectropion was and told me the NHS should have treated it when it was first seen 2 years ago! Anyway he sent me for abdominal and transvaginal scan which both came back clear and scheduled me to have cauterisation on the ectropion.

During this time I then developed extreme pain in my thighs. Sometimes it feels like they are tingling at the back and near my bottom with shooting pains in the front of them.

I had my cauterisation done 8 weeks ago and my consultant took 3 more biopsies to be cautious and they came back clear again with just inflammation and no abnormalities.

Of course after having this done it made no difference to my pain (i was pretty sure it wouldn't as this pain seem totally unrelated). Before the procedure I was told to come off my combined birth control and stay off it until advised by my consultant. I have now been off it 9 weeks. In this time I experienced a bleed for two weeks with pelvic pain but due to my procedure my consultant is unsure if it was a period or healing from the cautery so I still can't comment on how bad my periods are without being on my pill.

I was first put on it 7 years ago after going to my GP with bad period pains and very irregular periods (I had one every 6/7 weeks lasting 7 days at a time).

I am experiencing the shooting pain in my bottom daily, it's hard to explain but it's very quick and sharp and intermittent, some days I will only feel it a few times and some days I have it on and off all day! Also the thigh pains are now a daily occurrence, the only relief I get is in a hot bath.

I saw my consultant 2 weeks ago for a follow up and told him although the bleeding seems to have stopped since the procedure that I'm still getting all the pain and he agreed that he doesn't think it was related to the ectropion. He then mentioned endometriosis and said the next step because they had ruled out everything else would be laparoscopy. Although I've been told I have to wait 8 weeks to discuss this due to a holiday in a few weeks time.

I have now been to my GP again asking for pain relief to at least help me until this time but I just keep getting fobbed off. Last week my GP handed me a referral for a therapist and I was extremely offended. They also gave me diclofenac, I tried this for a week and did nothing,went back yesterday and again looked at like I was crazy and told 'not to worry!!'.

So here I am, I feel like I'm going insane and no one is taking me seriously. I am extremely worried my doctors have missed something nasty but keep being told that through 2 years of tests it would have been found by now. But my daily symptoms just have me worried about what on earth could be going on :(.

I also through all this time have experienced unrelenting fatigue, I'm so tired all the time along with:

Thigh pain (daily)

Shooting/burning pain in bottom.

Upper arm pain

Weird Vaginal and pelvic shooting pains

Constipation and diarrhoea

Headaches

I just feel so helpless at the minute as the doctors are telling me there are no other tests they can do other than the laparoscopy and I am a bit skeptical about the possibility of endometriosis due to not having the most obvious or common symptoms and the fact my symptoms started whilst on the pill so I guess I'm writing here to see if anyone has experienced anything similar.

Apologies for it being so long! 🙈 just trying to give a clear view. And thanks to anyone who reads it I really appreciate it.

[Terrapin78]

I get the shooting sharp pain up the bum and also a feeling of being totally bloated or inflamed. I also have a weird very short numb and tingle feeling that happens on my thigh every so often, don't know if that is the same as yours?

Going to the toilet is extremely painful like I am going into labour! Periods are erratic and changeable from heavy to light and often to missing.

[Snee in reply to Terrapin78]

Hi Terrapin, thank you for replying. I can't say I have the feelings of being bloated, but I can definitely relayed to the weird tingle pain in the thighs, usually at the back or at the very tops.

I can also relate to the toilet issue in a way, I experience some pain but put that down to the constipation.

Have you been diagnosed yet?

[Terrapin78 in reply to Snee]

Yes I have been diagnosed but only through a scan and examination. The scan showed a cyst on left ovary and the examination their was nodules behind my cervix and he old feel nodules on the vaginal wall. But I know the area that truly affected is my bowel area as most of my symptoms are there.

As I had the strangle numb tingly feeling on my thigh my go sent me for a head Mri which came out negative, think she thought I might have a mass in the head. Just wish I had the scan for my bowel as its a blummin long journey getting help with endo!

But it's interesting that you have the same thigh symptom as I never old have thought it was endo related...after being on this site a week I am finding out the links. There is a member called lindle who is a fountain on knowledge with endo and it is worth reading her page and articles for more info. She says that the pain or weird feeling in legs could be because the endo is pressing on a nerve.......worth reading

[Terrapin78 in reply to Terrapin78]

P.sci am awaiting a surgery date........laparoscopy alberation it can't come soon enough!

[Snee in reply to Terrapin78]

That's what I don't understand, even though I've had abdo and internal scans, my gynaecologist did not do an examination for endo and I have not been offered an MRI scan or anything before being put forward for a possible laparoscopy. (Although I am very scared of MRI in fear of what it might find).

I am also finding being on this site interesting, before now I had no idea leg pain was remotely linked to endometriosis for some people.

Thanks for recommending, have looked at Lindle's post and have found it very interesting regarding endo pain in legs and also rectum.

Yeah i bet! The waiting for all these things is the worst! I Hope you get the date for your lap soon and you can get the answers you're looking for.

[JeanOsborne]

Hi, welcome. Not everybody gets symptoms and for a lot of women they only find out they have it due to infertility. Being on the the pill wouldn't necessarily mean you wouldn't get symptoms.

There is obviously something wrong , whether it is endo or not don't give up until you get answers.

If you are in pain insist GP give you something to help, don't leave until they do.

You also need to insist on the lap to find out what is going on.

Most of the symptoms you describe sound like endo, but it could also be a lot of other things.

Unfortunately we really do have to firm and advocate for our own health. Women with endo generally know more about it than most GP's, so I know how frustrating it can be. But you really do need to fight to find out what's wrong so you can get the correct treatment.

Good luck and if you need to talk or have questions don't hesitate to ask.

[Snee in reply to JeanOsborne]

Hi Jean, thanks for the reply.

I understand from reading posts on here that symptoms can vary and not everyone has the same symptoms.

It really is a fight to get the doctors to take you seriously and to push for tests. Just because some tests come back clear doesn't mean the doctors should give up on looking for answers and that's what I feel mine keep doing.

I have been given naproxen to try this time but really had to push them for pain killers as they told me they were worried about the effects of them on the stomach.