New To Endo. Advice would be Great

[MonJon]

Hi

I have just had a laparoscopy and they found endometriosis and adhesions.

I was treated for the endo and was removed from under the bladder area.

I am worried because I am only 26 and I am scared about possibly not having children.

Has anyone been in the same boat as myself? Will I be Fighting this for the rest of my life? Will I be able to have children ok?

On a side note after visiting the doctors I was advised that I should of been on the pill but the Hospital did not do such a thing. I cannot actually take the pill because I get Migraines and I have high blood pressure so does anybody know any alternatives?

Many Thanks

Monnie

[Samdoe]

Aww Hun I really feel for you, & I feel the same at 27. I worry about children, I am also quite a large girl so I can not have the pill anyway. They tried me on the mini pill, that was ok for me xx

[Juleyanne]

Firstly make sure your gyne is a specialised endo adhesions gyne. Because it is such a complicated condition my years of personal experience have taught me this. Unfortunately I ended up having various ops and investigations over the years which I believe made adhesions worse. Years down the line after endo and adhesions spread because it took so long to diagnose and back then, adhesions were not so acknowledged as the big problem they can be. A specialized endo adhesions gyne may save you years of unnecessary procedures, but of course every case is individual. I had Zoladex injections to induce temporary menopause to stop oestrogen production which feeds endo. Ovulation causes oestrogen levels to rise sharply, so this is why they try through various methods ie the pill, mirena coil (which did not work for me) and Zoladex with synthetic hrt to stem the production of oestrogen, Zoladex is a very expensive injection in the stomach monthly which can have side effects to mood and bones (so only ever given for 6 months) max) to limit this. They don't always give this as a first approach to endo but it can be effective and if it works, endo is likely to be your problem if not adhesions are your main problem. A endo specialist gyne gave a talk a couple of years ago who used to teach other gynes about this condition. I remember him saying that surgery to remove it has to be aggressive and every bit must be removed to help prevent regrowth initially. If even a tiny bit is left, hidden in hard to get places like pouch of douglas it can come back, another reason for having a specialist from the start!

I assume yours was picked up by a lap as ultrasounds, CTs are less reliable? The dilemma is always if you want children, they probably won't remove the ovaries or suggest at your age

a hysterectomy. Hormone controlling treatment is usually the approach used in your case.

Apparently having children is supposed help control endo or so they say! I would probably say try and have a family at your earliest opportunity but then again I am not qualified to make decisions for you. I would suggest having a long chat with an endo specialist gyne at the earliest opportunity.

[Samdoe]

Aww Hun I really feel for you, & I feel the same at 27. I worry about children, I am also quite a large girl so I can not have the pill anyway. They tried me on the mini pill, that was ok for me xx

[MonJon]

Thanks for the replies, it is always nice to know there are others who can support each other.

Does anyone know where I can find a endo adhesions gyne myself as the local doctors are useless and I would rather sort this myself.

I would love to start having kids but I am in a lot of pain on the left side under the rib cage and just round the back, My left overy is really hurting too. Does anyone know if this is related?

Thanks

[MonJon]

Sorry if it sounds like I have a million and one questions.

I forgot to ask, I did have a pregnancy about 2 years back but we miscarried the child.

Does anyone know if this will have any effect on any future pregnancies?

I am planning on having children, is there anything I need to do? Is there a special Midwife that can help with this condition? I was in a lot of pain under the ribs, but the ovary section was fine, during the last pregnancy prior to losing the child, would this be common?

I know I want to get pregnant but should I wait and find out what my side pains are or should I straight way try and conceive? At present I am on no Contraception.

Thanks

[MonJon]

Hi does anyone have any other info.

Thanks