Burning sensation?? NO treatment has helped

[rp77]

Hello all, I'm new here as have recently been diagnosed with endo through laparoscopy. This may be quite a long post but please could people read it because I have a symptom that is never mentioned on these sites and I'm getting really concerned that no treatment is getting rid of it.

I feel like my experience up to getting the diagnosis was unique, as I have done a lot of searching on here and can't find anything about the symptoms I've had.

Let me explain... About 4/5 months ago I started to feel a cold/burning/throbbing sensation 'up there', the only way I could describe it was that it felt like it was the beginning of cystitis. It wasn't a constant sensation that was always there, it would come on a few times a day, and was very uncomfortable causing me to squirm in my seat at work. It wasn't cystitis because I went to the doc for a check and I was able to go to the toilet fine.

The burning sensation went on for a few weeks and I did leave it hoping it would go away, it didn't of course (still no troubles weeing and no pain during). So that's how I ended up at the gynaecologist (a very good one). She examined me and told me that I had Pelvic Inflammatory Disease and prescribed me 2 oral antibiotics and 1 cream to put 'up there' every night for a week- strong stuff basically.

After this week I still had the burning symptom, perhaps not as bad, but I was still getting the burning pain. So when I went back to her I told her this. She examined me and said it looks great up there, the infection has cleared etc. She said if I told her I was feeling fine then she would send me away and that's that. But, because I was still feeling this weird symptom she suggested further examination, a scan or laparoscopy. I chose the lap.

So, couple months ago I had the laparoscopy. She diagnosed me with endometriosis. I had grade 2 endo in 3 places on my ovaries, and grade 1 on other areas in my pelvis (I saw photos and there was a lot of increased vascularity all over). She removed the endo on the ovaries.

Now, I want to say here that my periods have always generally been ok and quite normal. I do get period pains every month for the first two days and they can be quite painful but I wouldn't say anything out of the ordinary. Anyway, I do have endometriosis and I saw her 3 weeks later to discuss further treatment. Now I thought that after the surgery maybe the endo was the cause of my burning feeling and that it would go. It didn't, and was pretty upsetting. I told her I was still getting the burning feeling, she said I definitely don't have the PID anymore as I look really healthy in there. She said she reckons the burning was a mixture of the PID and the endo. She prescribed me the contraceptive pill (3 months on at a time, then 1 week break etc) and told me the pill will clear me all up inside and stop the endo coming back.

Also..I seem to have had a lot of discharge since the op (anyone else have that??). Sex has been a little painful (before and after op) too.

So I have now taken 2 pill packets back to back so far (took the pill at exactly same time everyday). In the middle of the second pack my period has decided to show up!! It seems to be a fairly heavy period (I thought the pill should make it lighter?). What I'm about to say now is really gross, here goes........ this morning in my knickers there was a fairly big blob of fleshy stuff which was covered in blood but I moved it with a tissue and it looked like flesh/tissue and was solid matter, it was not blood. What is that?? I have looked that up and I hear it is normal in periods sometimes. Never had it before though! Anyway, period is here and I'm afraid I still have the burning sensation. Compared to 4 months ago nowhere near as bad, but its there and no treatment (antibiotics, laparoscopy, pill) seems to be getting rid of it. I will be going back to the gynae in couple of months for check up but I want to know if anyone else has this.

If ANYONE can shed ANY light on what is going on I would be so grateful. I'm concerned about the burning, the painful sex, the constant discharge etc.

Thank you so much in advance x

[Mabes]

Just a thought - have a look at Pudendal Neuralgia. Burning pain or sensation sounds nerve related. You can find some sufferers on the Pelvic Pain Support Network.

Also the fleshy thing - I've heard of it before. A friend of mine had it, and she went to the doctor about it. I think he said it was a larger than normally seen piece of uterus lining shed during her period. In that respect it was considered normal - just bigger than we'd typically see.

[Quu1 in reply to Mabes]

The fleshy thing could be a blood clot commonly associated with heavy cycles.

[ClaireSpurdle]

I am on a similar pill which I take every six months and have a break. A few weeks ago I had a similar bleed which was very painful and my doctor said that it's basically my body having a clear out. You can still have periods if you take e pill without a break. It depends on a lot of things, for example if I domt take my pill at the exact time every day I have periods. Also if you are stressed, exercise pattern changes or even if you go abroad it can come on.

I sometimes get burning pains and back pains if I habe a water infection.

Not sure if that's any help, but I hope you get it sorted.

[Froggy34]

Hi. Do you have endo near your bladder? I get a burning feeling over my bladder area most days and find it really uncomfortable. When I had my lap, they didn't find any endo on my bladder, just in my uterovesical fold but as it had started since then, I'm thinking that mine had spread. Also could the fleshy lump be a Decidual Cast? Google an image and have a look. I heard that it's more common for people with endo to have them although I might be wrong. Was just a thought x

[vickflick]

Hey, I have a similar thing, I was diagnosed with endo via lap about a month ago! Id been in pain for about 3 months burning pelvic pain, bladder pain, lower back pain etc, I had cysts on my ovaries and endo removed from pelvic wall! Since the lap and before I have had that constant cystitis pain, bladder pain when going to toilet and just uti syptoms I was checked and did have a uti but that was 2 weeks ago now and antibiotics should have cleared it up! There is also general pain 'up there' I knew exactly what you meant! Funnily enough it went away when I was on my period! I also had the tissue after I had sex for the first time, never seen it before, havnt seen it since! I'd be very interested too if anyone else has had these symptoms and if they do go soon!!

Thanks

X

[rp77]

Thanks guys for your responses they're all really helpful.

I looked up pudendal neuralgia, it says a lot of sitting down can cause it and actually I only ever really get it when I'm sitting at my desk at work, I don't seem to feel it at other times.. I may mention to my gynae. I really don't have any urinary issues though as no pain when weeing at all, and I don't need to go often. It just feels like a cold throbbing in my vagina, feels far up like at the top.

she only found the endo on my ovaries.

Hopefully my period will stop soon, it's a long one!

I looked up the decidual cast, it looks exactly like what I had!

[vickflick]

Just to add I did think it could be interstitial cystitis which is apparently really common with endo!! I'm going to ask my gp!

[rp77]

Ouch poor you. Cystitis is horrid, especially when it won't go away.

I'm pretty fed up with the pain 'up there'!! My partner has been working abroad since January, he came back for a couple weeks in May and I went out there for couple weeks in July. After not seeing each other for such a long time obviously we wanted to get close, but it was pretty painful for me. It's quite upsetting. And I know a lot of people on this site are experiencing the same. Been with my partner almost 6 years, but I feel worried that in the future this will affect us badly. He said he's not concerned and will be with me no matter what. As a woman though the worries are there!

[nicoleray]

Hello all at the age of 19 I was Diagnosed with 2 wombs (Double uterus) ever since I've had lots of Health Problems related to down there. 2 week Monday just gone I had a lacascopy and they found Endometriosis in my tummy they removed it as well as a wall what causes me a lot of pain during sex. I know the Double uterus doesn't have anything to do with this but leading up to this operation I just had I had a lot of break through bleeds, pain and strange sensations down there like I had a urine infection. My Gyne Doctor says the bleeds and pain and sensations could be due to having Endometriosis. What helped me through this dealing with the pain and everything else was things like a hot bath, water bottles, little naps, some muscle rubs to ease the aches and pains I get in ma sides and back and with my pill I had to change it a few times to find the best one which helped with my hormones and bleeds so don't worry about the bleeding a lot ino it's hard and I totally understand what it's like constantly bleeding and not being able to do anything such as Sex a right mood killer i'v had a lot of low points because of it and it might not help but I found sometimes taking an extra contraceptive pill helped stop the bleed. And having a great supportive boyfriend. I hope some of this helps sorry long write lol

[rp77]

Goodness two wombs, you poor thing. Yes I treated myself to hot bath last night as I was in a lot of pain and it helped.

This morning I had a bad dizzy spell on the train into work, vision went completely blurred and thought I was going to either be sick or pass out! I've had some pains this morning, don't know what caused that though.