Any help advice and support would be amazing right now ... new here :) (endometriosis, hyperplasia, steralisation, serve pain,)

[elizal]

im looking for advice others experiances and i guess someone to talk to ... its kinda a long story bt if u could find the time to read and respond i would really appreciate it

im 26 year old 3 children all via section 20/09/ 13 /15 ... i was steralised in may 2017 before this i had 4 day periods no pain no anything.... in the july i had a abnormal smear + hpv and had to be put to sleep for further tests during this they found hyperplasia which wasnt there when i was steralised... in the last 8 months i have had serious lady issues including

9/22 day periods that are very very heavy for the first 6/9 days then follows with brown discharge/ spotting/ clots serve pain in left and right side of lower tummy just inside of hip bone sickness depression hair loss pain when i get desperate for a wee also pain in tummy (as above) on bowel movement diareah and constipation urinary retention ending in catheter pain on ovulation pain/ tension / cramp feeling in top of leg / groin bad back weight gain (2 stone) urinary infections most months migraines which iv only ever had when pregnant bad skin my moles are all changin getting bigger raising etc

all this has resulted in 3 2 week + hospital stay a lot of gp visits alot of pain killers including morphine codine tramadol naproxen diclopenic and the usual over the counter plus preventative anti biotics anti sickness stomach liners ... iv also had mefanamic acid and transanamic acid .. im under 4 different consultants including gyne oncology and gynecology all of which agree im unusual as they put it as they have never had anyone as young as me with hyperplasia..iv also paid to consult with 2 seperate private consultants. i thought i maybe had ptls (post tubal ligation syndrome) as imaging like ct and ultra sound only show cysts iregularities on the uturus and moderate dilation of endo cavity and thickening of 14mm a week after period but dont really seem to give a cause for the amount of pain.... i have been offered a laporoscopy with my next lot of biopsys (which are 2 months late) hopefully as somepoint in the next 2 months ....does it sound like i have endometriosis ??? could it all be caused by the steralisation ? iv done ALOT of research and clip steralisation can change blood flow and hormone production .... the last year of my life just seems to of fallen apart i gave up my buisness my partner is loosing buisness as hes having so much time off ... im so depressed... i dont no what to do and i cant seem to ever get anyone to sit and listen to all of the issues and see them as one thing ... from everything iv read and seen and people i have spoken to it seems like a hormone imbalance cld be the orginal cause as i have alot of symptoms which im guessing is caused by the steralisation as i was fine until then it started getting really bad pain wise october time ... iv read the endometriosis can be caused by back flow type thing could that be more likley because of the hyperplasia.... if one more person tells me there not really sure what to do with me or that im a bit of a interesting case because of my age i may scream ... they keep going on about having a coil fitted as it will help bt i really dont want to add more hormones into the mix and iv had a coil before as a contraception not only did i get pregnant on it bt i also gained weight and had issues on it . i been so low tht i considered not bring here anymore i have life insurance and i felt that would benefit my family much more than i currently am .... im not currently that low but knowing that in less than a week its going to get really bad again is soul destroying .... thank you if you made it to this point if anyone has anything to offer please xxxx

[JOSANDY40]

It does sound like Endo. C section and other medical procedures may have stimulated it. Have you had your hormone levels checked? The weight gain? A change or increase in food or alcohol? Thyroid checked? Depression, Stress can cause weight gain as can lack of exercise after having a child. Keep away from soya as its contains a natural estrogen. Rarely a hormone imbalance can be tumour hormone driven. A change in brain chemistry can also effect hormones as the Pituitary gland and Thanus in the head can be effected. If you rule out Endo, blood tests next then if they show something of imbalance see a Specialist in Endocrine System. Good Luck

[AllWeNeedIsluv]

Huge hugs my love I really hope that they get to the bottom of this. Sounds like could be endo your sterilisation sounds like it could defo have a part yo play. You say you don't want hormones maybe try homeapathic medicine hun they'll be a lot of natural drs who'd love to help, thinking of you stay strong.😘💝

[Vamp45]

Hello sweetheart. Firstly, don’t look at this as one huge insurmountable problem because you sound completely overwhelmed. Separate these problems out and prioritise what YOU think needs sorting out first. Drs can be very dismissive with chronic illness as it needs a lot of interaction between different people, such as other consultants, your GP, deciding what are the best options are etc and don’t have the sense of urgency that you’d like because everything is a process. I’ve spent the last 20 years immersed in the land of Drs/hospitals/consultants/surgeons and can only give you advice from my experiences and my perspective.

As I said before, you need to break all this down into things you can do to help yourself and things you have no control over. If you don’t mind, I’ll put things in bullet points. Not because I want you to feel patronised, it’s just the way my brain works and I don’t want to repeat myself too much and confuse you. Please remember that this only what I’d do personally, based on my own experience.

* Don’t wait for Drs to tell you what you need. It’s your body and you’re the one in pain so stop trying to self diagnose and tell THEM what you want to happen.

* As you’re in so much pain, go to your GP and tell them you need proper, strong pain relief. They’re always boringly reluctant to prescribe the regular use of opiate painkillers because of the possibility of addiction. However, you need to tell them that the pain is ruining your life and you have no intention of abusing opiates but you need strong medication to help you have some kind of life. Codeine and paracetamol aren’t enough and you need opiate medication. If Tranexamic acid has helped reduce the amount of bleeding, even slightly, or any drugs that have helped, also insist these are put on repeat. You can be weaned off opiates if necessary but you can’t be expected to live in chronic pain while they faff about spending months trying to find out what’s wrong. You’ll need to tell your GP that this is what you want to happen and if possible tell them the drugs that have relieved the pain the most and you want them prescribing on repeat prescription, at least until you know what’s going on.

* You know that a lot of your symptoms are hormone related and hormones are causing considerable problems, as that’s why you were admitted to hospital. The Drs will suggest the coil as it would help with the bleeding. However, if you don’t want to because you know it doesn’t suit you, then don’t do it. They can’t make you. Ask what the alternatives are. But there’s very little point in worrying yourself about what started it as it’s here now. Worrying about what caused it is pointless.

* Any surgery will cause adhesions, which is internal scarring which can be extremely painful. C-sections could have caused them, your sterilisation or both. Your back could be hurting from having 3 epidurals as well. Adhesions would cause many of the symptoms you describe. It’s like pouring super glue into your abdominal cavity as your insides get stuck down and together. They also may have extended past the surgical sites causing intestinal damage. This could account for your bowel problems, sickness and additional pain while leading up to, and having your period as the ability for your body to have room for the normal swelling to occur would be very restricted.

* Why are you waiting for biopsies and a laparoscopy that are 2 months overdue? Ring the consultants secretary and tell her that these need doing ASAP. Also go to your GP and ask them to write to the consultant to remind them these are overdue and you need seeing urgently

* A laparoscopy is the only definitive way to tell if you have endometriosis. They’ll also be able to tell you if there are adhesions and their density. They don’t show up well on scans. The only real way they’ll be able to tell you what’s going on is by opening you up and being able to actually see what’s happening.

* You must be proactive in your own care. That’ll mean pushing the Drs and being more assertive with them. You don’t have to be rude or confrontational, just know what you want doing and make sure you tell them. Write a list before you go to the Drs so you don’t forget anything.

* You’re bound to be depressed for many reasons, not least that your hormones are all over the place, you’re in a lot of pain and have no control over what’s happening to you. I’d also suggest asking the GP if you can see the surgery’s counsellor. Every practice has one. It might help you to talk to someone objectively or you can just go and have a good cry to.

I wish you all the best and hope that I’ve at least given you some things to think about.

Good luck Michelle xxx

[elizal]

thank you for your replys they have really helped i will respond properly as soon ad i get a moment .. i do really appreciate you taking the time to read and respond so kindly ... you ladies have made me feel less crazy xxx