Feel deflated

[Leah87]

Ladies I need to chat here as I feel like I am being silly , for about the last 6 months my symptoms have got worse , I have had previous oopheretomy in 2007 ovarian cyst and ovary removed , for about over a year now I had severe heavy bleeding ,clots flooding daily for 10 weeks straight I had to get bit b12 injection weekly as was exhausted ,painful sex weight gain back pain abdominal pain pain when bowels move , over last 6 months my symptoms have got worse I have no energy what so ever I have terrible abdominal pains and painful sex tmi sorry I feel urgency for bathroom to pass urine and sometimes can loose control of bladder I have pain when goin to bathroom ,constipation some time loose stools back pain feel sick at times , seen gyn last year says sounds like endo but my bmi to high so was told they wouldn't do laparoscopy to try bring weight down and get marina cool fitted that was it last appointment at gyn symptoms have got worse I'm in pain he examined me then said he would send me for ultrasound and internal scan which I got and was asked during scan when my last period was I said hadn't bn getting a pain recently then when I got results they said all was ok and couple small cyst could be my periods and to come get marina coil fitted which I don't want due to previous back experience trying to have it fitted now since December my periods stopped I had a day of light spotting December then the hour after my internal scan I had slight spotting and had nothing since recent basic bloods and urine showed nothing someone please tell me they have had these symptoms or can relate I feel like I'm going off my head hurts m embarrassed as one I can't be intimate with my husband to be and 2 I feel like doctors must think I'm a pain and a hyprecondract and that my friends n family must think I'm a moan and I'm making it up I am only 28 yrs old some one please share any advice what do I do I want to go back to docs I want a lap but bmi 49 so they will say get weight down which I can't I'm trying and feel like I'm loosing thanks sorry for such long post I just need get it out. There ,xxxx

[Beth1986]

Hi Leah,

I am so sorry you are having such a rough time of it. Although my symptoms don't entirely match yours I know what its like to feel like it's in your head and that those around you think you are exaggerating how you are feeling when really your whole body is screaming in pain and not even the professionals can help you. It's not an exaggeration, it isn't in your head and to me it does sound like endo, which I think you know already. Have you tried to get referred to an endo clinic? Lindle has a page on here that helps you find one in your area. If they are uncomfortable doing a lap due to your bmi they may be able to help with other medications that your GP hasn't thought about that may help in the interim. I am currently having the zoladex implant and pregabalin whilst I wait on some more surgery.

Advice aside I just want to reassure you are not on your own and making you feel isolated and down is just another part of this horrible condition. Try to stay strong and if you haven't already, definitely look in to an accredited endometriosis clinic. You get the instant impression they know far more what they are doing than you would with a regular gynae consultant.

Take care

Beth xx

[Leah87 in reply to Beth1986]

Thank you so much Beth but the only thing is at present I can't get referred if it's private as I just can't fund it on my own that's all that's putting me off I'm supposed to be getting married next July and right now I don't want to dye to how horrible I feel and down x I'm now awaiting another gyn appointment which will look at me and say loose weight 😞

[Beth1986 in reply to Leah87]

Hi Leah,

It's all NHS funded so you won't have to pay a penny and any GP should refer you if you request it. It's your right as a patient. Honestly read Lindles page, it really helped me.

I know how insufferable the situation gets, believe me. This is my second run of it and the first time I was sent from pillar to post sent for test after test and although I did have a lap nearly 4 years ago now, they didn't remove enough of it and now it is back with worse symptoms than before. Unfortunately most gynae surgeons don't operate on it properly or even understand the extent of it and you are more prone to further problems, even with mini pills to stop you bleeding (as I found out).

See what your gynae has to say when you see them but if it is as you fear and they turn you away get on to your GP about a referral. Please don't continue to suffer. Endo takes away your quality of life, your confidence not to mention the physical struggles daily. You deserve more so demand it. You wont regret it!

Beth x

[Leah87 in reply to Beth1986]

I will have a look is it on her page ? Thank so much so nice to chat to someone who understands

[Leah87]

Hi do u know how I can find a specialist within my are so I no who to ask go to refer me too

[JeanOsborne in reply to Leah87]

Hi if you look up the BSGE website you will be able to find your nearest one. You can then go to GP with this information and say you want a referral to them. Can I ask are you on any hormone treatment? If you are then that will not be helping you lose weight. So it's not your fault. You are not alone Hun. Stay strong and you will beat this.

[Leah87 in reply to JeanOsborne]

I'm not on any hormone treatment they r pushing for me to get marina but I don't want it

[JeanOsborne in reply to Leah87]

Hi I can completely understand that . Stay strong hun

[cjampot]

Hi, im so sorry you feel so down and you are not on your own. I dont have all if the symptoms you do but certainly some and its frustrating and upsetting.

Definately get a second opinion ...

bsge.org.uk/ec-BSGE-accredi...

Here is the link the girls were talking about.

I think some form of hormone treatment might help but the one that is right for you.

I got pressured into the coil the first time and while it didnt work for me that time my consultant is trying various pills and possibly the combination of coil and pill.

There isnt a one size fits all solution and its your body so if you're not happy speak to someone else.

Im with a specialist now and the difference compared to a normal gynae at my first excision 4 years ago is huge.

Stay strong and remember you're not on your own

X

[Leah87 in reply to cjampot]

Hi thank you so much use are all so kind I feel so so down I feel am at rock bottom just now and it is effecting my relationship with my husband to be he's fab with it all but it's so frustrating I try to paint a smile on every day but I feel like it's getting harder to do this and I feel like a failure to my little girl I can't go swimming or be active I'm exhausted all time and so sore what kind of role model am I being really so sorry I'm so embarrassed about my weight but I am trying to loose it but can't so sorry for moaning ladies